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Instructions Unclear: or, That Would Have Been Nice to Know

As a late-diagnosed autistic, I am now years deep into the process of learning about my brain and its quirks. I’ve been on the neverending journey of re-examining my life and experiences through this new lens, and I have been on the anger-denial-bargaining-depression rollercoaster that is learning to integrate information that, at the end of the day, sets you apart from your peers and (in most instances) your society at large.


I have navigated so much of this journey with the wisdom and support of disability advocates, writers, bloggers, and other creators who are sharing their learned and lived experiences. I have been able to make many changes to my life and my expectations - including my leaving full-time employment - thanks to the things I’ve learned.


In this post I hope to gather and summarize some of the concepts and information that has been most helpful, and may help reframe some things for you too. I will just list and very briefly summarize each of these ideas here today - and hope to add on as there are more things I remember or come across! Keep an eye on my blog for posts that will dive more in-depth into each of these concepts and how they can impact your experience of the world.


So, here are some of the things that have changed my thinking - things that I thought were normal for everyone, or that everyone struggled with; concepts that frame some of my “failures” as simply being part of my neurotype; ways of processing or thinking about the world that might not always make sense to others; hacks to help keep me on track. I will be expanding on these one or two at a time, so please let me know if there are any you are particularly interested in and want to learn about sooner rather than later!


Without further ado, I present:


Things No One Mentioned, but Would Have Been Nice to Know!!


Buckle up, it’s a long one. Feel free to search for terms you’re interested in (ctrl+F), or leave a comment to request an overview of something you’ve heard about but aren’t familiar with!


Decision fatigue - the idea that having to make hundreds of decisions a day (cereal or fruit? Hair up or down? Answer that call or email them later? Which gas station to stop at?) is tiring for the brain and that at a certain point, your decision maker may run out of gas. When that happens, you feel terrible brain fog and indecisiveness over even little things like what PJs to put the baby in.


Parts of executive functioning - “Just doing the thing” requires the cooperation of a LOT of little moving parts inside your brain. These include working memory, self-inhibition, planning and prioritizing, time management, task initiation, and more. Think of it like a scaffolding supporting a building in progress. If any little part isn’t doing its job, the whole thing can come crashing down!


Verbal shutdowns - Have you ever been in a hard conversation with your parents, a coworker, a partner, your teacher, and just found yourself crying instead of talking, even if you aren’t all THAT sad? Verbal/auditory (spoken and heard) communication takes a LOT of resources in the brain, and sometimes you just don’t have the bandwidth if you are emotional or in sensory overload. Knowing about verbal shutdowns has let me make adjustments and accommodations so I can stay engaged and don’t feel like I can’t finish a conversation if things get intense.


Nonverbal Communication options - these are things that help you communicate in ways other than spoken language. There are SO many options that can be as high-tech as an iPad talker or texting back and forth, or as low-tech as having a wristband with different emotion faces you can point to. There are so many ways to still be able to advocate for yourself when speaking is tough, and you deserve to be able to make your needs known.


Demand avoidance - the idea that demands (anything from “you have to clean your room” to “omg I got you this snack and I KNOW you’ll love it”) can trigger the threat response in your brain and cause all kinds of difficulties! A lot of times people with demand avoidance are described as stubborn or difficult, when in reality your brain just thinks you need to be protected from the threat that is a loss of autonomy. There are a lot of approaches that can help regulate that threat response, like declarative language and collaborative problem solving.


Safe foods/samefoods - that One Thing that is always OK to eat even when you feel tired, non motivated, queasy, or overwhelmed. Many times safe foods are seen as “less virtuous” since processed and packaged food tends to be more predictable - always the same taste and texture. When I am really stressed I can go for days on nothing but corn dog nuggets. Now, I give myself some more slack for that! Fed is best, and that goes for adults as well as kids.


Physical recovery needed from emotional stress - I didn’t realize that not everyone feels completely physically wiped out after an emotional conversation, stressful day, or last minute change in plans. If I have something stressful or scary during my day or week, I now know that it takes a toll on my nervous system that is reflected in my pain levels, energy fluctuations, and sensory sensitivities. I give myself grace and time now to recover the way I need to.


Body doubling - just having someone there in your space can help keep you on task a lot easier. Think a study session with a friend, or you and your partner folding laundry together. Even if you aren’t working on the same thing, just having another presence with you helps keep your brain from going on autopilot as much. This can work virtually also!


Task initiation & outside pressure - I saw a tweet recently that said that “hookup culture has helped so many ADHDers clean their rooms” and it’s so not wrong. A lot of the time it can be really hard to get over the hump of inertia to start something involved and daunting like cleaning up. If you have an external deadline - someone else’s expectations and timetable - all of a sudden, enough pressure is on so you can kick into high gear. This also applies to things like writing an entire paper the night before it’s due.


Interest/passion led focus and work - the other surefire way to keep someone focused on a task is if it’s something they are interested in, curious about, or passionate about. This can be really helpful information when you are choosing a major or looking for a job, and is the reason that so many neurodivergent kids do so well with homeschooling where they can follow their interests.


Gestalt language processing - together with episodic memory, this is a concept to explain how some people process and remember the world around them. In GLP specifically, this is a child who learns language first in “chunks” or “scripts” (gestalts) and only later learns to break them down. Think of a kid who won’t for the life of them “use their words” for more water or a new diaper, but will sing a Daniel Tiger song for every occasion. These kids need an entirely different approach to teaching language, and are often misunderstood or brushed off when they do try to communicate.


Scripting - this ties in with GLP and is a tool I really support and love. Have you ever been working up to a stressful conversation and rehearsed what you wanted to say? Having that feeling of security and practice can be hugely helpful for people who struggle with conversations, and scripting can be used in professional, social, and just about any interpersonal situation. Start embracing nontypical communication styles!


Literal thinking - how that can show up in SO many ways that I didn’t recognize because I am, surprise surprise, a literal thinker. But that can’t affect me, I say! I don’t take EVERYTHING literally. Except….the concept of literal thinking, apparently. For me, literal thinking isn’t an inability to understand metaphors or conversational irony, but more like - being super stressed out if we don’t leave by 5:00, because we SAID we would leave at 5. Thinking that “eye contact” meant literally staring at someone’s eyeball (more on that later). Being upset if an outcome isn’t exactly the way someone said it would be, even knowing that there were variables. It can come off as extreme inflexibility, when it’s really my brain struggling to cope with things that are not as it expected.


Eye contact - apparently most people have each others’ faces in “soft focus” a lot of the time, just kind of…..gazing at the face as a whole. Taking in the expressions and quirks of eyes, mouth, head posture, eyebrows all in one. When I think eye contact, I’m literally switching my gaze from one eyeball to the other and sometimes to the nose. Is this because we have trouble processing the “whole” for getting lost in the details? I struggle to maintain my focus on keeping my gaze where they expect it, while taking in the little facial details that Mean Things in real-time AND listening to what they’re saying AND getting ready to respond. Whew.


Burnout vs depression - if you are afraid that a loved one is going through a depressive episode, you are worried because they are withdrawn, sleeping more, losing interest in things. The traditional advice is medication and making sure to get out and Do The Thing so you don’t turn into a total slug. But burnout is really system-wide exhaustion from processing and dealing with a world that is honestly TOO MUCH. If you want to recover, you NEED to rest. You need to reduce your demands and your stimuli, and spend time letting your nervous system rebalance itself. Just like exposure therapy will not make a sensory sensitivity less painful, forced socialization and school attendance will not make burnout go away any faster.


Masking for protection - masking is such an important concept to understand if you are going to change your life and habits for the better. It is working overly hard to fit in with the world around you, and it comes at an extreme cost to the masking person. Listening to your body and your own needs is so important. But it is also important to be realistic about the society we live in and the notion of safety and fitting in. In many situations, not being able to act as expected, move as expected, respond as anticipated can put someone in danger. Many times in settings of employment, medical and mental health care, any contact with law enforcement, and in a classroom setting, acting in nontypical ways can make someone a target, inhibit their access to spaces and resources, or even put their life and agency in danger. It is so vital to understand the place and importance of masking, and how to care for yourself before, during, and after those situations.


Diagnosis and disclosure - similarly, having an official diagnosis and disclosing this diagnosis can come with risks that newly identified autistics should be aware of. There are precedents for an autism diagnosis costing people their employment, their rights to decide about their own healthcare, their housing, and custody of their children. A diagnosis could be a barrier to immigration, military service, and security clearance. Keep this in mind when exploring diagnosis and when disclosing those results, and when discussing other people’s situations!!


Self-Advocacy - this starts with being able to understand and identify your own needs. One of my favorite sayings is, you don’t know what you don’t know! In other words, if you don’t know that most people don’t struggle with the transitions in showering, or in responding verbally in stressful situations, or feeling dizzy every time they stand up, or remembering verbal instructions, then you don’t know that you can ask for accommodations or to do things a different way! Scripting is fantastic for letting people know how to support you, and talking to fellow NDs is so important to learn about their struggles and strategies.


“Functioning” labels - these are trash, and it’s important again to know why. Functioning, a lot of times, refers to how disruptive you are to the people around you, not how well your lifestyle is actually serving you. If someone is able to work, drive, pay bills - you’d call them high-functioning. But that tells you nothing about the cost to that person or how sustainable that level of “functioning” is. It is also really important to note that some people are significantly more disabled than others by their neurotype, and recognize that because of the perception of their functioning, their voices and experiences are often excluded and ignored. Listen to people, believe their experiences, give them their agency, presume competence.


The Evils of Screen Time - another really harmful stereotype. Screens can be incredibly regulating for ND people, they can seriously support communication, they can enable social connections that are so much more challenging face to face. You need to be sure that any ND individual (especially child) is really well educated in the dangers of online socialization, and ensure that good monitoring and support is in place in case of bullying or exploitation. But don’t assume that all online friendships are dangerous, and don’t assume that screen time is just “rotting someone’s brain” (which is also a harmful and ableist statement).


That’s about all I can think of for now - I may update this post or make a part 2 as more things come to me! Subscribe to never miss an update and to get the latest posts, downloadables, and tips.


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