Thriving Autistically: Communication

Posted on by Realistic Autistic
two women sitting on chairs beside window

This post on autism friendly communication is part of a series on thriving as an autistic person. We live in a world that is not always kind or accommodating for people who are different. Not only that, but autistic and other neurodiverse people can have very fragile health and specific medical needs.

Finding out what works for you is a significant endeavor. This week I’ll be focusing on communication styles so you (or your loved one) can live your best life. The first post, which prompted this series, is here. The second post, on food and supplementation, is here. The third post covered movement (exercise and more), and the fourth was on creating an autism-friendly environment at home and work.

As you read this series, please remember autistic people can have very different experiences. I’ll tell you what works for me, and do my best to explain other things I’ve heard of. But in the end, you are your own best resource. Try things. Find what works for you. Find doctors and specialists that will help you explore your options intelligently and safely. How good or bad you feel every day is, in some very important ways, up to you.

Types of Communication

Autistic people communicate in various ways. The societal standard is, of course, verbal communication. It’s expected that you express yourself over the phone or in person. This type of communication is often supplemented by nonverbal information, such as facial expression, posture, and head/body orientation. The modern world also allows and expects a significant amount of ability to communicate via text. Things like sending text messages, emails, or even writing letters are valued to some extent.

The thing is, autism friendly communication can include a whole lot more than just these. I’ve described some forms of communication in more depth in the past, but in truth, I left some things out. Some people use sign language, for example. There are various systems of communication involving pictures, including the Picture Exchange Communication System. Some of these come in smartphone app form, making them extremely accessible.

Alternatives and Preferences

There’s also things that technically count as Augmentative and Alternative Communication, but I consider facets of one of the previous categories. For instance, physicist and genius Steven Hawking used a speech-generating device to communicate verbally. I’d consider that verbal speech, even if the tempo of the speech isn’t an exact match to a human using their vocal cords. Pencil and paper communication is a form of textual communication to me.

Although I learned to speak and write at about the same rate as other children, I still favor textual communication over other forms of communication. I do best with instant messages or texting, where you’re still having a conversation at a rate I can follow, but I don’t need to worry about displaying or reading body language. My absolute least favorite form of communication is using the phone. Something about having the tones of voice and immediacy without having the person’s face to read is utterly maddening to me.

As always, your metaphorical mileage may vary. Some people love talking on the phone above all else, and hate writing emails. Others prefer communication where they don’t feel pressured to respond right away, and so emails and snail mail (physical mail) are their preference. Some autistic people’s vocal cords don’t respond the way they want, which makes verbal communication difficult or impossible. Others have motor skills challenges, which can make sign language and typing immensely frustrating. Autism is a very individual experience, and autism friendly communication means finding what works best for you.

Direct, Honest, and Kind

These three qualities are best practices when communicating with autistic people. When I communicate with people, these are what I aim for, even an an autistic person talking to neurotypical people. Since miscommunications are common in autistic-neurotypical communication, I find it valuable to take steps to minimize them as much as possible. The less time and energy I spend trying to figure out misunderstandings, the better I do.

Direct

Approaching a subject directly, rather than circumspectly, helps us know exactly what you mean. It’s essential for autism friendly communication

For example, say it’s my chore to do the laundry. For some reason, I have not done this chore despite the dirty clothes piling up. One way to remind me of my chore would be to put laundry hampers of dirty clothes in front of my door. The sight of this might remind me.

However, I might simply move the hamper out of my way and continue onwards, entirely oblivious to your implied message. And thus, it is wiser and more effective to say, “Hi Sarah. I had the expectation that you would do the laundry this week, since it is your chore. It doesn’t seem to have been done, and I’m feeling frustrated about that.”

We can then have a discussion about the situation. Perhaps I might recognize the situation and apologize for forgetting. We both might realize I’ve been working extra hours this week, and my normal patterns have been disrupted. Or it might be that we recently swapped chores and that one is actually your responsibility this week. Regardless, your frustration can be addressed and the situation rectified.

Honest

This hopefully goes without saying. Autistic people typically don’t thrive at noticing subtleties or reading between the metaphorical lines. Lying or being misleading about what you want or how you’re feeling is incredibly unhelpful. Even white lies can cause a great deal of confusion. Being “polite” should come second to being understood, in my opinion.

Many autistic people, including myself, tend to take things at face value. If you say you’re feeling a certain way, I tend to believe you. So sarcasm and some types of humor can be really challenging. So can metaphors and turns of phrase.

A few years ago someone used the phrase “loaded for bear” to summarize how incredibly prepared I was for my doctor’s appointment. I was utterly confused until he explained the context, which apparently was that when you went hunting, you took ammunition for the quarry you were after. But very safe (or paranoid) hunters might also take bullets suitable for shooting bears. Just in case one happened along and threatened to ruin your trip.

I find it interesting that some familiar sayings can actually be deconstructed or put into context to make sense, but that’s not always the case. When in doubt, avoid the idiom and just say what you mean clearly. Not every autistic person has an affinity for language.

Kind

I wish this went without saying.

Be kind; everyone you meet is fighting a hard battle.

Ian MacLaren/John Watson

This is typically true of all people, but it’s especially true of autistic people. We often have a multitude of medical issues, emotional baggage, and communication difficulties. These factors make it exponentially more difficult to handle situations, manage ourselves and our emotions, and thrive.

I include being tactful as kindness, by the way. Honesty without kindness is rarely welcome at parties, and wins you no friends or consideration from others. There are ways to say, “Yes, that dress does make you look fat,” that don’t run such a high risk of hurting the asker’s feelings. Although in that particular case, I typically just point that I have no fashion sense and thus my opinion won’t be helpful.

Ask vs. Guess Culture

When you ask for a favor, do you go right out and ask, knowing the person might say no? Or do you hint at your problem and see if the other person will offer what you need? On the whole, which of these two approaches do you use?

For instance, say you need a ride home from school or work. Do you ask a friend or family member, “Hey, I have an appointment after work, but my car’s in the shop. Could you pick me up from work today?” Or do you tell them about the circumstances that have made your usual transport not possible, and hope they’ll offer what you need if they can help? Like, “I have an appointment directly after work, and my car’s still in the shop. It’s such a bother. I’d take the bus, but it’s so slow I’d miss the appointment…”

Defining

This direct method is Ask Culture. The indirect, subtle method is Guess Culture. This is an Internet theory, rather than a scientifically proposed theory. However, I found it rang remarkably true on inspection. So here’s the original inciting story, if you’re interested. The short version is that these two styles of communication exist side by side in people. Sometimes people use a mix of these, or are more likely to use Guess Culture in their families or friendships that aren’t super close.

In Guess Culture, you avoid putting a request into words unless you’re pretty sure the answer will be yes. Guess Culture depends on a tight net of shared expectations. A key skill is putting out delicate feelers. If you do this with enough subtlety, you won’t even have to make the request directly; you’ll get an offer. Even then, the offer may be genuine or pro forma; it takes yet more skill and delicacy to discern whether you should accept.

The original article and thinking insists that these types of communication are equally valid. And I will say that it’s not uncommon to have either style. Some families communicate almost entirely in Guess Culture. So it’s not like either style is abnormal. However…

Choosing Fair Communication

Frankly, when it comes to autism-friendly communication, Guess Culture is disabling. That tight network of shared expectations? And the skill of putting out delicate feelers? That’s putting a steeper learning curve on communication. That’s extra effort and pain, put on a person who’s often already struggling with significant emotional and physical difficulties.

In my opinion, that’s asking us to play mind games. We already often start at a really significant disadvantage when learning how to communicate. Sometimes even stringing together whole sentences is a struggle. And then this is the expectation? If this was math, that’s like asking someone to do Calculus when they haven’t even gotten a handle on Algebra yet. It’s patently, systemically unfair.

So yeah. If your goal is to support your autistic loved one or self, opt for Ask Culture. Become okay with asking directly for what you want, and hearing “no” sometimes. It’s really not the end of the world. It’s clearer, more honest, and it’s a lot fairer to people with all kinds of communication struggles, not just autistic people. In my opinion, there’s nothing polite about complicating your communication and disabling an entire group of people in the process.

Nonverbal communication differences

Autism-friendly communication can mean recognizing and accepting differences in body language. There can be some really major differences, which can cause significant friction if left unaddressed.

Eye Contact

This is such a common metaphorical tripping hazard in autism communication that it was literally the first thing I thought of when I sat down to write these sections. Autistic people, and other neurodiverse people, often have different patterns of eye contact than the established norm.

Allistic or neurotypical people adhere to a socialized norm for eye contact. In conversations in the US, that’s about 85% looking directly at the speaker, 15% looking away at the floor or some other object. If you give 100% eye contact, it comes across as aggressive or like you’re staring. But if you don’t look at the speaker enough, the assumption is that you’re not paying attention.

There’s a problem with those assumptions. Being forced to make eye contact or look at someone’s face can wreck an autistic person’s ability to comprehend spoken words. Some autistic people can’t hear at all if they’re forced to make eye contact.

If this is true of you, it’s something you should communicate to friends, family, and coworkers. The potential for misunderstandings around this facet of communication is quite high, unfortunately. These are expectations neurotypical people have but often don’t realize they have. It’s important to help them realize that their observations and expectations might be incorrect when it comes to autistic people.

Posture and Body Language

This subset of nonverbal communication is actually one of the fastest ways I typically spot other autistic and neurodiverse people. For me, it’s particularly evident when people walk. Autistic and neurodiverse people, myself included, often have a certain clunkiness or stiffness to our movements. I assume this is related to differences in our brains, and goes hand-in-hand with gross motor function challenges and problems with feeling where your body is in space… but I honestly don’t know.

What I do know, though, is that if I’m doing poorly, I notice my movements actually become more stiff and clunky. Which can be one of the first signs of struggling that I notice, sometimes. Which feels kind of backwards, but I figure as long as it works, it’s fine. (I wouldn’t say I’m ever graceful in motion, by the way… except maybe 13 years ago, and only on roller skates. Maybe.)

Regardless, autistic body language can be different than neurotypical body language. Certain parts of body language may be stilted or exaggerated in autism communication, and others may be missing entirely. As a result, I have to confess to significant discomfort when interacting with other neurodiverse people.

I spent years finely tuning my senses to pick up on all these minute details from neurotypical people. There are certain rules that are typically followed. Certain gestures mean things, and I’ve memorized quite a bit in terms of general patterns and specific details. It’s really confusing to now be interacting with people where these rules don’t apply, or partially do. It’s all on a case-by-case basis, because autistic people are very different.

That doesn’t mean I’m going to stop spending time with other autistic people. I simply need to get better at adjusting my expectations for body language and posture.

Complicating Factor: Mental Illness

By the way, a person’s entire posture may be dictated by struggles with mental illness. Depression and anxiety often co-occur with autism due to the difficulties we can experience in a world that isn’t suited to us.

Growing up, my own posture, which included hunched shoulders pretty much all the time, was likely a product of my depression and lack of confidence as well as my general struggles. I’ve seen similar postures since I started paying attention. Here’s an example.

I’ve actually seen even worse versions of the leftmost pose.

Again, body language is partly a socialized thing. It’s not usually directly taught. If it was taught by rote, it wouldn’t be such an issue in autistic communication. I don’t think I chose to slouch in childhood, but I also didn’t try to stand or sit differently. I’m fairly certain I was told to, but it simply wasn’t a priority.

Facial Expressions

This is one of the biggest parts of nonverbal communication that autism research focuses on. It’s been a big thing because autistic people often don’t read them well, or at all. Yet it’s something neurotypical people often take for granted.

Here’s the kicker: facial expressions vary by the person. They vary by the situation. And by the culture we live in. They aren’t simply ways to communicate the speaker’s mood, but also a method of influencing those around us.

Think about it. The way one person expresses anger might include narrowed eyes, furrowed eyebrows, and a raised voice. But some people go quiet when they become truly angry. They stop showing emotion as much, in service of trying to restrain their fury. Or in a quiet, comfortable home setting, a person might feel free to express themselves as they choose. But in a workplace, especially an office, it may not be acceptable to raise your voice to indicate your anger. So a neurotypical person might modulate their anger response or stifle it entirely.

And finally, some cultures prize lively expression. I currently work in a factory with various people with heritages from parts of Central and South America. Some of them dance and sing, even as they work repetitive, boring jobs that could easily crush the soul. One guy I’m particularly fond of actually insisted today that I might call him a mildly insulting word, simply because he forgot to show me the plastic aprons this morning and I got icing all over my clothes.

Nonverbally autism friendly

Nonverbal autism friendly communication doesn’t mean leaving body language out of the conversation. But it can mean noticing what body language you’re using and translating it directly if your words aren’t already doing so.

If you are feeling frustrated because you don’t think your partner is listening to you, your face is likely communicating that fact. But you might also say, “I am feeling frustrated right now because it doesn’t seem to me like you’re listening.” Expressing yourself clearly gives the other person a second chance (or first chance, if they can’t read your body language) to address your concern.

Autism friendly communication also means being okay with atypical body language, eye contact, and facial expression patterns. It can mean learning what’s normal for the autistic person. Because we differ so spectacularly, there aren’t really basic rules to rely on. The only pattern you can link back to is that we’re all trying to “speak” different versions of our cultural standard for body language. How well we learned those standards varies. So does how well we can use our bodies to express what we’ve learned.

Supports

Most of what I’ve discussed here is more about direct communication with people with autism, like talking or emails. I’d like to briefly touch on some things that are also communication, but are more indirect.

It can be helpful for autistic people to have routines and patterns to our lives. It can also be helpful to have expectations expressed clearly, in a central location, where they’re easily accessible to us. This is where supports come in.

Think about the expectations you have for yourself or your loved one with autism. Who does which chores, how often? Where are appointments tracked? Schedules, calendars, and chore boards can all be important and helpful additions to our lives.

For example, I started using Google Calendar in my second year of college. I have it track everything. It’s complete with reminders, notifications, addresses, even the people I went with sometimes. I couldn’t possibly remember most birthdays without it. And definitely not my doctors appointments. I can now look back and find out exactly what I was doing in any given week, which is really helpful for filling out job applications.

Similarly, there’s a chore board up on the wall by my computer. Each chore is on a card. The cards are labeled with their frequency and the chore’s name. The board has two halves, with my name on one side and my spouse’s on the other. I can easily check which chores I’m responsible for at any given time.

Maybe you do better with a physical planner you can carry with you. Or perhaps your chore board should live in the family room. There are a lot of different options to try. Find what works for you.

TL;DR Autism Friendly Communication

Recognize there are many kinds of communication. Speech, texting, emails, Picture Exchange Systems, and behavior are just a few. All of them are valid. Regardless, be direct in your communication as best you can. Be honest. Lying or twisting the truth only makes things harder for us. And be kind. Autistic people often struggle with medical issues, emotional difficulties, and communication difficulties. Recognize each of us has our own problems, and extend grace and kindness to others.

Choose Ask Culture over Guess Culture. Ask directly for things, and be okay with hearing no sometimes. Don’t make us guess what you want or mean. That relies on us knowing your expectations and behavior patterns without communicating them, and that’s disabling. Choose fair communication. Ask.

Be aware of differences in nonverbal communication. Eye contact is a big one. Some autistic people aren’t able to listen well if they’re forced to make eye contact. Forcing neurotypical-style eye contact is disabling to such people. Our body posture and movements can vary too. Facial expressions can be a nightmare to read properly, in part because they vary by the person, the situation, and even the culture.

Translate your body language if needed. Telling people directly that you’re upset, rather than waiting for them to read your frowning face, can help make communication easier for autistic people.

Finally, include supports to clarify communication. Centrally-located calendars chore boards, and schedules can be incredibly helpful to making expectations and routines clear for everyone. These supports can improve the wellbeing of autistic people in the short and long term.

As always, find what works for you.

Book Review: Nonviolent Communication

Posted on by Realistic Autistic

Nonviolent Communication: A Language of Life, by Marshall Rosenberg, is a book describing how to communicate in meaningful ways that are supportive of yourself, your relationships, other people, and life itself. Though the book doesn’t ever talk about autism, I feel it’s still useful to discuss. I feel that this communication style would reduce misunderstandings on and off the spectrum. If I could change English so it mostly used these ideas and rules, I would.

This book is both a work of education and also of philosophy. Rosenberg teaches different mechanics of communication (as in, phrase your thought this way, not that way). But he also teaches a positive, humanistic point of view that’s essential to making those mechanics work best. In reading this work, I could clearly see the influence of the psychology Carl Rogers.

However, Rosenberg has taken those ideas and both expanded on them and also made them practical. Which is to say, the tagline, “Find common ground with anyone, anywhere, at any time, both personally and professionally,” is not a joke or a marketing gimmick. It is quite literally true, and there are several examples in the book of practitioners doing exactly that. In at least one instance, the practice likely saved them from significant injury or even death.

Cover of Nonviolent Communication, by Marshall Rosenberg: a pair of overlapping word bubbles. One green, one red, purple where they overlap. Subtext: A language of life. Words matter. Find common ground with anyone, anywhere, at any time, both personally and professionally.
Cover of Nonviolent Communication, by Marshall Rosenberg

Violence in English

I agree with Rosenberg that a lot of English and general communication involves a stunning amount of inaccuracy and manipulative language. For example, we often say, “this made me feel angry.” The reality is that although our reactions may be immediate, we choose whether to feed that reaction or set it aside in favor of a different one. Nobody can make you feel or do anything. The phrase shifts the responsibility off the speaker and onto someone or something else. Which is both dishonest and unhelpful, to be honest.

This applies to working with autistic people and kids. One might typically say, “His stimming drives me nuts!” Or even, “His stimming is so annoying!” You could instead say, “I feel aggravated when he stims because I expect a quiet environment right now, and his stimming makes noise.” This recognizes that your aggravation isn’t really with the example stimming autistic guy, and it also expresses why you’re feeling upset. Rather than lecturing the example guy to stop stimming (and thus making things worse), you could politely ask him to move to a different room. Or even move yourself, adjust your expectations, or change the situation positively so he doesn’t feel the need to stim. Instead of attacking the autistic person, this phrasing opens up conversational options, including possible solutions.

Not Easy, but Important

This method of nonviolent communication definitely requires a lot of honesty. It requires you know yourself and what you want and need. And, it requires you be clear and direct about those things when communicating about them. This is not an easy set of requirements. But I do think it’s incredibly important, especially when dealing with autistic people.

By and large, autistic people do not read between the lines. We can have trouble taking others’ perspectives, because others can be so different from us. Our own needs can include things like “taking 15 minutes after work to spin a bicycle wheel and stare at it” (a real stim I heard described once). How, then, can we be expected to understand exactly what everyone else’s wants and needs are unless we’re told?

Especially since those wants and needs can change based on the situation at hand. A mom or roommate might be okay with having a playlist of favorite YouTube videos playing loudly in the morning before school or work, for instance. But many parents and roommates wouldn’t be okay with that same playlist going loudly at 10pm, when everyone is heading towards bed. In the morning, a certain level of noise and activity can be normal. But in the evening, headphones might be a wise choice.

Confusingly, some households might be different if people work second or third shift, or like a certain noise level all day. This is why it’s so important to communicate needs and wants clearly. There isn’t one correct way everyone does things. There are ways that work better for some people than others, and communicating about them is how you find what works best for everyone.

Personal Communication Adjustments

As I was reading this book, and afterwards, I began to notice how my own use of language tended to evoke guilt, shame, and negativity. This was true of how I spoke and thought to myself as well as how I communicated with others. I strongly suspect I have a lot of very significant work to do in terms of word choice adjustments, if I want to use nonviolent communication regularly.

However, it might well be worth it. I have the ability to predict, to some extent, how people will act or react to different ways of phrasing things. I also have a general understanding of how people and systems work. In reading the philosophy and mechanics of this book, it struck me as significantly different than the norm. However, the assertions the author makes ring true to me.

In life, I try to be kind and supportive of others. It’s something I value about myself and in others. This philosophy shares that value. I recognize it as superior to some of my current styles of communication. So I’ll be trying to let this book change me and make my communications with others more positive.

It’s going to be a long road, because I have a lot to unlearn. But this book has made my life and communication better already. I hope you find it as wonderful as I did!

Read This Book If

No if. Just read this book. Autistic people, parents, professionals, teachers, everyone. The ideas, methods, and philosophy Rosenberg teaches would be valuable in any setting where humans are involved. Honestly, my only regret about reading this book is that I opted to do so in audiobook format first. That was all the library had available. I have since purchased a copy and will be rereading it in hopes of improving my own life and communication.

Thriving Autistically: Environment and Sensory Support

Posted on by Realistic Autistic
living room interior

This post on making an autism friendly environment is part of a series on thriving as an autistic person. We live in a world that is not always kind or accommodating for people who are different. Not only that, but autistic and other neurodiverse people can have very fragile health and specific medical needs.

Finding out what works for you is a significant endeavor. This week I’ll be focusing on environmental and sensory factors so you (or your loved one) can live your best life. The first post, which prompted this series, is here. The second post, on food and supplementation, is here. The third post was on movement (exercise and more).

As you read this series, please remember autistic people can have very different experiences. I’ll tell you what works for me, and do my best to explain other things I’ve heard of. But in the end, you are your own best resource. Try things. Find what works for you. Find doctors and specialists that will help you explore your options intelligently and safely. How good or bad you feel every day is, in some very important ways, up to you.

Environmental Impact

There’s an old saying that seeing is believing. I consider it a commentary on the metaphorical blindness of people, though I’m not sure it’s meant that way. The subjects I’ve talked about in posts prior are somewhat visible things. After all, if you’re sitting around all day instead of getting some movement, that’s somewhat noticeable. And what you put in your mouth every meal, same deal.

This week, though one of the things I’d like to focus on is your home environment. And your work environment, if you have a job or volunteer position. What exactly makes for an autism friendly environment?

Trouble in the Air

We do not, as a rule, think a whole lot about our home environments. The air, after all, is typically invisible. However, the air can carry all sorts of things that interfere with human functioning. Some of the obvious ones are:

  • air pollution
  • mold
  • algae and pollen
  • dust and dust mites
  • perfume/cologne
  • pet dander

At work, things like sawdust, airborne flour or other food products, printer pollution, and industrial chemicals also factor in.

Despite their near-invisibility, these airborne factors can have a huge effect on an autistic brain and body. Usually the human body is supposed to purge toxic or inflammatory substances from our blood and body. However, sometimes autistic bodies do not necessarily do this quickly (or, rarely, at all).

An Autistic Environment Example

A few weeks back, I found myself dropping into depression. My mood climate sank and darkened, and I felt dissociated and sad. As much as I could, I evaluated things. Nothing obvious had changed in my life. I was still eating incredibly healthily. Still getting good exercise 5 days a week. My social life hadn’t changed. Everything seemed the same as it had been a couple days ago.

When I thought about it, my current circumstances weren’t great. I was in a job that didn’t pay my bills, was physically taxing (not in a good way), and had little in common with my interests in life. So I figured the difficulty of my circumstances had simply started hitting home. I assumed there was nothing to be done. It was reasonable, honestly, to be depressed in my circumstances.

The thing is, a day later I happened to stick my hand into the bag of fresh cherry tomatoes on the kitchen counter, and one of them went smush. It had molded. The rest of the bag was 100% fine, it was just that one. I tossed the tomato, washed my bedding, and cleaned up the kitchen. Within a couple days, the depression and dissociation had receded.

As you can guess from this story, I am extraordinarily sensitive to mold. Different kinds of mold affect me differently, which makes detecting its influence difficult. But if I start feeling bad out of the blue, that’s the very first thing to check.

Things to Help with Airborne Issues

If you or your autistic loved one seem to have an easier or harder time with life when traveling or staying over at a relative’s house, you may want to explore why. Or even, if they seem to have different problems in one area versus another. It isn’t always the autism or the person specifically. Sometimes it might be that the trash isn’t taken out as routinely, or the new environment doesn’t have a pet.

Some ways to address these things include having personal air filters and/or upping the quality of your home furnace filter. I live next to a pond that grows toxic algae in the summer, for example. So having a good furnace filter supplemented by some smaller HEPA air filters in the bedroom and office is mandatory.

Personally, I use two of these Levoit air purifiers. They’re fairly inexpensive for what they do, and the filters refills last months and only cost $30. One is located near my home computer, where I work. The other is in the bedroom. This model is particularly nice for the bedroom because it has a “lights off” setting. My bedroom has to be kept as dark as possible for me to sleep well (more on that later), so that feature is mandatory. It also runs very quietly. The marketing says as low as 24 dB. All I can tell you is that I can hear it, but only barely, when the house is completely quiet.

Light, Sound, and Electricity

There’s actually way more to an autism friendly environment than these familiar airborne concerns. These will be briefer, so bear with me. Let’s start with light.

The first thing to mention is that some types of lighting flicker. And while most people don’t notice, some autistic people do. Headaches, annoyance, and focus issues aren’t uncommon as a result. Incandescent lightbulbs are usually your best choice for autism-friendly lighting.

I mentioned above that my bedroom needs to be kept quite dark. That’s because my internal clock (circadian rhythm) is easily disrupted. If my body registers too much light late in the evening, I don’t sleep very well. This is not uncommon with autistic people.

Sunlight

In order to get the best quality sleep, I try to get sunshine in the morning to wake myself up properly. Where I live, though, there often isn’t any during the winter. The days are typically overcast and grey. In lieu of sunlight, they make lamps to simulate sunlight. Verilux is the brand I’d trust for this.

I have one of these lamps, which I use in the morning on occasion. You don’t need a really big or fancy one. At least for me, a few minutes of this light is more than enough to make a difference. You can literally just point it at yourself while you’re brushing your teeth in the morning and that can be enough.

For darkening the bedroom, I found out that blackout cloth is quite inexpensive. Making proper blackout curtains may be difficult, but stapling blackout fabric to the wall or over windows isn’t very hard at all. Weatherproofing stuff can be good for lightproofing door frames. And in lieu of all that, there’s always sleep masks. I like ones with molding over the eyes, so I can blink without feeling like my eyelids are being held down.

Screens

Another complicating factor in an autism friendly environment is blue light. Most phones, TVs, and computer screens generate a lot of blue light in addition to the other colors they display. This light tells your body to wake up. Which is fine in the morning and afternoon. And definitely not great in the evening, when you should be winding down.

For computers and jailbroken phones, the best app hands down is f.lux. It changes the quality of the light your devices emit, warming the colors so your internal clock isn’t fooled into thinking you’re outside in the sunshine. My doctor also strongly recommends simply putting away your phone or getting off the computer or TV an hour before bed. I personally struggle with that, so f.lux is my go-to.

Again, your mileage may vary here. But it’s worth testing using apps, sleep masks, or putting your devices away before bed, to see if it affects you.

Sounds and noise isolation

There’s a few things to keep in mind here. Autistic people are prone to sensory over- and under-sensitivity. So we might as easily seek out playing drums (or pots and pans) loudly as hide from them. A home can be a surprisingly loud place, with cooking in the kitchen, siblings playing or listening to music while they do homework, appliances running, and even perhaps a TV playing.

A soundscape doesn’t need to be loud to be overwhelming. A few years back I reviewed a pair of noise-canceling headphones in conjunction with a complex gym environment. The fact was, the headphones were excellent, but they didn’t entirely spare me from the exhaustion of being in that environment. Having a quiet place to go was essential, even with the volume of the place turned down.

Any autistic person could benefit from a safe, predictable space where everything is the way it should be, mind you. Soundproofing it is a touch that can be added to help isolate the person from the house’s noise, or the person’s noise from the rest of the house.

I personally fall in the over-sensitivity category, which means it’s best for me to have a quiet place to retreat to. Thankfully, most of my house falls into that category. But it can just as easily be a single room in the house, or even a big cardboard box. An autism friendly environment can be any number of things.

Motor sounds

Another sound issue I’ve only recently become aware of is machinery-based. Very low frequency sounds can affect a person’s wellbeing. Some industrial motors generate sounds in this frequency range, and it can affect people even if they can barely hear it.

In my condo association, we installed a motor for some equipment to kill off the toxic algae that grows here. The motor was installed in the back yard behind a few units, fairly near where I live. I don’t particularly notice a difference, but one resident who lives closer to the motor did. They reported not being able to focus or sleep. A fairly major problem I would say!

Because I’m a curious sort, I went and stood by the motor for a while one day. It felt bad. It was like the sound was shaking my internal organs and making them malfunction. I now avoid the area entirely. Usually the equipment that would make this kind of noise is kept away from homes, but workplaces are another story. If you work around boiler rooms or near equipment that makes a low droning sound, and tend to feel worse when you’re there, it might be worth investigating whether this is an issue for you.

EMF

The last thing I want to mention is electromagnetic fields, which are generated by objects that use electricity, such as computers, TVs, and cell phones. A certain amount of this is normal in life. For example, the Earth itself has a magnetic field. It’s really low-grade, but it exists.

The thing is, we’ve filled our modern lives with EMFs. In suburbs and cities, you’ll pretty much always be in range of a wifi network. Even if you can’t connect to it, it’s still permeating the air and vibrating your cells. Same with cell phone towers. If EMFs were audible, it’d be like a dozen orchestras blasting at all times. As our technology improves (3G -> 5G -> whatever we have next), the intensity of these signals amps up. This really doesn’t make for an autism friendly environment.

Most people seem relatively unaffected by the silent cacophony, but because of our sensitive bodies, autistic people can sometimes be severely affected by it. It can affect our sleep, digestion, mood, and mental health. I personally sleep on a grounding mat, put my phone in airplane mode, and turn off my wifi at night. All of these things, though seemingly strange, do actually help me sleep better.

I’m still exploring this subject, to be honest. It’s clear to me that it matters, but my exact tolerance isn’t clear. It remains to be seen what measures help the most. Regardless, here’s a supplier that makes meters and shielding items to help live with less EMF. I’m thinking I might try the hoodie this year, but I want to be sure I can safely wash it before I buy.

Sensory Supports

An autism friendly environment doesn’t need to be all about taking factors away. While it’s good to reduce noise, EMF, and light for someone like me, it can also be important to add things.

I’ve heard this sort of thing called a sensory diet. Basically, a person can be comforted and supported by sensory experiences. A hot cup of tea or coffee is a more mainstream sensory experience. So is familiar music, or comfort foods.

But autistic people can derive comfort and joy from a much broader range of things. Consider chewable or fidget toy jewelry, fabric swatches, essential oils or other scents. All of these things can add to a person’s experience or provide a moment’s respite from the demands of life.

I carry around a small tin of solid perfume, personally. The smell, which is mostly floral with some spice, calms my mind when I smell it. I typically take it out when I’m panicking about a social interaction I can no longer do anything about. Putting my nose into it for a bit helps me mentally move on from the situation by bringing me elsewhere. The tin fits easily in my pocket, but a purse or backpack would serve just as well.

TL;DR: Autism and Environment

There are tons of environmental factors that can affect autistic people’s wellbeing. Airborne factors include allergens like mold, pollen, and dust, but also air pollution and perfume. HEPA air purifiers can help, and so can face masks like the KN-95 types.

Lighting is another factor in an autism friendly environment. Having interior lighting that doesn’t flicker is important, but some peoples’ internal clocks are so sensitive that it’s best to lightproof the bedroom or wear a sleep mask. Finally, computer and phone screens put out blue light, which can trick your internal clock and really wreck your ability to sleep well.

Sound can play a big role in things too. Too much or too little sound can make an autistic person’s life harder. There’s also certain very low frequency sounds that can affect a person’s sleep and focus. Having a safe, sound-dampened space to be can be a very important accommodation.

Finally, EMF is a possible factor. Phones, wifi networks, cell towers, TVs, and computers all put out these fields. While most people aren’t strongly affected by them, some people, including me, are. My sleep is much better without the silent cacophony of my wifi networks, phone, and computer going all night. It’s worth investigating if this is an issue for you, as there are some fairly simple fixes to help.

Don’t forget that building an autism friendly environment isn’t all about taking things away. Having stim toys, comforting scents, fabric swatches, lava lamps, and whatever else makes you happy is also important.

I hope this post has given you some things to explore. Your environment can have a major impact on how good you feel every day. Moreso than I think most people realize. Find what works for you and what makes you happy, and include it in your life as much as possible.

WYR: How to Talk to Disabled People

Posted on by Realistic Autistic
landscape near hidden kvernufoss waterfall in iceland

https://www.forbes.com/sites/andrewpulrang/2021/06/30/5-sensible-guidelines-for-interacting-with-disabled-people/

I’m really struggling this week, so please have this article passed to me by a fellow advocate.

Like the author, I find there’s a general discomfort people display when interacting with people with disabilities. The way we’re treated can vary wildly. The experience ranges from simply ignoring the person to treating them like a helpless baby that needs your help for everything.

You could consider me “fortunate” in that my disabilities are more or less invisible. Autism doesn’t typically have physical differences. Neither does depression, nor does an anxiety disorder. Effectively, I walk among you, camouflaged to seem “normal.” A person trained to recognize autistic traits might recognize my autism, based on how I communicate and move. But the average person has no idea.

That is not always a kindness. When I break the illusion of normalcy, the reaction is often very negative. Because the observer is surprised as well as upset, they don’t handle the situation gracefully. Hurt feelings and unkind words are common. For example, I once had an acquaintance over to my home in college. We talked for hours, and accidentally ran my mental and emotional energy out. As a result, I had to rather ungracefully have the acquaintance leave so I could recuperate. The suddenness really hurt her feelings, and that’s likely part of why we don’t talk any more.

In contrast, visible disabilities are ones you can see. An amputee, or someone in a mobility device or wheelchair, are obvious examples. There is typically no escape from the recognition. Additionally, some people decide, upon recognizing the disability, that the person must need their help. The implied assumption is that there’s no way the disabled person could handle the situation by themselves, or that it’s just too painful to watch them struggle. Either assumption is degrading.

The article doesn’t use these precise words, but the autism community has a quick way of saying some of the advice in this article: “Presume Competence.” Basically, make the assumption that the disabled person can handle things themself. A disability, visible or not, does not necessarily mean the person can’t navigate daily life. Many of us find workarounds for ourselves over time. They simply aren’t intuitive to a non-disabled person.

Autism as a Disability

This is a bit of a debate. I would personally argue that yes, it is. In part because of the structural ableism and prejudice in our culture, laws, and society. The way others treat us and the opportunities made available to us impact our ability to thrive and grow.

In short, the social model of disability applies here.

I don’t personally think that covers everything, though. Even if you fixed other peoples’ behavior and the systems we live and work in, some autistic people still have significant medical issues. I don’t even mean things like cerebral palsy or epilepsy, although those also exist.

No, what I mean is things like needing a dairy-free diet, or really high grade air purifiers. Our biological processes can be really, really fragile. If one tomato molds in my house, I begin falling into a depressive state. If I were to drink a glass of milk, I would be in a bad mood in 15 minutes. And the bad mood would last at least a day.

Some days I have trouble communicating my needs, emotions, and thoughts. Even days when I’m alone, that can be true.

So I don’t feel the social model of disability explains all those things. Even if I wish it did, so I could just blame others for my hardships.

I hope you find this article as helpful as I did. Even among disabled people, there’s a lot of variety. And I myself, as a person with invisible disabilities, would probably hesitate and make mistakes when talking to someone with visible disabilities. It’s okay to make mistakes. It’s good to educate yourself ahead of time to avoid making mistakes, though. And that’s why this article exists!

Legwork and Life: Full Time Work

Posted on by Realistic Autistic

Hey y’all. My life circumstances have changed pretty significantly in the last few months. I’m not yet ready to talk about the changes, though I will at some point when I feel able. Right now I’m spending most of my time handling the circumstances and trying to keep my head above water. That doesn’t lend itself well to introspection, loving communication, fairness, or maturity when discussing the changes and circumstances that led to them.

In the meantime, though, I’ve taken on a full time job. It’s not in a field I wanted, and sadly is not even slightly autism-related, but it will pay my bills and allow me to keep my living situation. But, it will cost me a significant amount of time. As such, this blog will be dropping down to once a week. I’ll keep making the Friday posts, which I feel are the most valuable to the average person.

When I started this blog, I wanted it to be a springboard into a career speaking and writing about autism. The fact is, if I’d started it ten years ago, that might have worked. These days you can’t just make quality content and expect people to find it. And that was my mistake. I don’t love marketing myself. I have a decidedly complex relationship with networking. And there are dozens, if not hundreds, of autistic adults out there trying to do the same thing.

I could argue that I’m probably one of the better-read ones, and as such deserve more limelight. But the fact is, I didn’t prioritize the advertising and marketing aspect of things, and didn’t get discovered by someone who really excels at such things. So (somewhat) predictably, I didn’t become popular.

I recognize the issue now, but unfortunately, I’m not in a position to capitalize on that knowledge. I still care very deeply about autism, advocacy, and education. That’s why I intend to continue this blog despite my impending lack of flex time and energy. But I have to be able to eat and have a roof over my head first.

You have my word that I’ll continue to provide thoughtful, useful, and valuable information about autism, life with autism, and other related subjects. My personal education on the subject is far from over. Autism is, after all, a spectrum. My experience is but one color in a brilliant rainbow of valid, fully human lives.

I hope you’ll continue on this journey with me. : )