Advice from an autistic adult to autistic teens aiming for independence

This is the time of year that a lot of teens and young adults are receiving acceptance notices for schools they applied to, looking for jobs, and generally aiming to take their first big step into the adult world – be it working a full-time job for the first time, starting a training course, going to university, living on their own for the first time, or some combination of the above.

I was a bit too ignorant to be nervous when I was leaving high school – I had no idea what was to come, but I knew it had to be better than high school, and I was right. That doesn’t mean that I didn’t make my mistakes during the transition, nor does it mean I couldn’t have benefited from some advice from people who know about how to adult while autistic. I had received a lot of well-meaning advice that was either useless or worse-than-useless for me, so the transition to uni and getting the hand of being on my own took me closer to the first three full years of my undergraduate program, whereas it seemed my neurotypical peers had the hang of things within three months. I am still getting the hang of adulting at 27, while most NT adults at 27 I know are already settled down and either raising or thinking of starting a family. Still, I am happy and safe, and that counts for a lot more than most people think it does. I thought I’d write up something to give advice to those just about to start on the transition to independent adulthood.

This isn’t for the parents – parents, frankly, unless your kid asks for help, at this stage in their life the best thing you can do for them is to stand back and trust them to make their own decisions. And mistakes. Because there will be mistakes, but part of learning to adult is making those mistakes and learning to deal with them. You won’t do your kid any favors if you micromanage.

For those starting on the transition to living away from their parents, some advice:

  1. If you do not already know how, learn how to do laundry now, before you move out. Nobody will do your laundry for you, and ruining all your clothes is both sadmaking and expensive. Start doing all your own laundry, or even better, all the laundry for your household, at least three months before you leave, so you’re used to the routine and work of laundry day.
  2. If you do not already know how, learn how to cook. Real food. From scratch. It’s both cheaper and healthier for you than instant stuff, and it tastes better. If you follow the right recipes, it’s not even that much more time-consuming than cooking instant stuff (especially if you follow time-saving tricks that I do, like chopping an entire onion whether or not I need that much and then keeping the leftover chopped onion for a sandwich or for use in a recipe the next day). Start cooking at least one meal per week for the family, so you can get used to the amount of time preparing food takes. When you get out on your own, invest in tupperware and pack away leftovers to the fridge or freezer – if you cook enough for, sa,y four at supper, then you get three extra meals out of it you can spread out to the rest of the week. When I have a busy week, I do all my cooking on my day off and pack my lunches and suppers away into the fridge and freezer – then weekday meals take no longer than heating up instant food.  Even if you’re living in a dorm, sometimes you don’t want the over-salted brown sludge with leathery mushrooms over mushy egg noodles they call “beef stroganoff” in the food hall. Most dorms have a kitchenette, and cooking yourself food there once in a while might be fun.
  3. If you will be living in a dormitory-style residence, buy a microwave and learn microwave recipes. If you are a picky eater like I am, I guarantee a stash of food in your room will save you from starving (as it was, I lost 50lbs in my first year of uni. It was 50lbs I could afford to lose, but that should still tell you something). Dorm food is united by one common theme across the vast majority of dorms I’ve been to or heard the reputations of: That is that it is almost uniformly awful.
  4. Find an organization and scheduling system that works for you. If agendas have never helped, they likely never will, but if you always have your phone with you, a phone app or Google Calendar might be useful. I survive through a combination of Google Calendar and timers.
  5. Exercise regularly, doing something you enjoy. Exercise is excellent for de-stressing, keeps you healthy, and help improve your mood. Make time at least three days a week for an hour of exercise (or six days a week for a half hour – this could include walking/rolling to work instead of taking transit, but also includes physical hobbies like playing a sport, swimming, cycling, or hiking).
  6. If you will live with a roommate, work out whose responsibility which chore is what day, and post it in a visible area. Make a habit of checking it off or moving a magnet or something onto the chore when you’ve finished it for that day and then you know if you’ve done your chores. From experience: no matter how well either of you intend it, if you do not set out a chore plan at the start and, more importantly, stick to it, work will be distributed unfairly and resentment will happen.
  7. If you are good at keeping your space clean and tidy, you’re better off than me and I have no advice that will benefit you. If, like me, you’ve always struggled with it, check out Unfuck Your Habitat. They’ve helped me keep my habitat cleaner than it ever was growing up.
  8. Learn how to budget. Ideally, take an accounting class while you’re still in high school, but if not, there’s plenty of reliable stuff to be found through Google. Learn how to account for money coming in, expenses, whether there’s a shortfall, etc. Decide what to do with any surplus you have now (otherwise it’ll get spent). I recommend having an emergency fund in your savings account to handle unexpected expenses like, “Crap, I forgot a permanent marker in my pocket and now all my dark clothes are ruined!”
  9. The adulting blog is to social situations and unspoken responsibilities of adulthood what Unfuck Your Habitat is to housecleaning. Read it for how-tos on everything from rent negotiation to job interviews.
  10. Lastly, online, automatic bill payment is your friend if you tend to be a scatterbrain – schedule the payment for just after your paycheck is deposited, and you’re good to go.

Blogging A to Z Challenge Signal Boost

I am finally (finally!) on the mend but still not well enough to take part in this, even if I wasn’t utterly swamped at work, but I thought it was a good thing that should be signal boosted: The Blogging A to Z Challenge is a month-long challenge for the month of April, where you write a post every Monday, Tuesday, Wednesday, Thursday and Friday for the month of April, one for each letter of the alphabet.

Sparrow Rose Jones is taking part at Unstrange Mind, and her series is autism-related. I’d strongly recommend you check it out.

Some thoughts on “behavior is communication”

Intro: On Twitter, realsocialskills posted a tweet that led to a conversation about issues with the phrase “behavior is communication,” which is very popular among the autism acceptance movement. Quickly, I found myself frustrated by Twitter’s limited length format which makes it difficult to discuss nuanced issues, so I decided to try to turn the thoughts into a blog post. Please understand that I don’t intend this as a unilateral condemnation of the phrase “behavior is communication” – many autistic advocates use it themselves to good purpose and I genuinely do support the sentiment behind it –  but rather I’m trying to explain why the phrase has made me increasingly uncomfortable as time goes on. 

I’ve had issues with the phrase “behavior is communication” for a while, and I give realsocialskills (who also has a website/Tumblr, which you should check out, by the way!) credit for inspiring me to look at why this phrase has increasingly given me pause recently.

My view is kind of complex and nuanced as reality often is, so I will do my best to explain where I’m coming from. I’m not against the sentiment expressed by “behavior is communication,” but I find the phrase itself a little troublesome, and I’m going to try to explain why. I’ll start with the positives of the phrase: Why it’s useful and why it expresses something that should be held important. Then I’ll look into my issues with the phrase, and at the end maybe try to suggest something that would resolve it.

The idea behind “behavior is communication” is a powerful one: It is the idea that disabled people – even severely disabled people without the ability to reliably communicate through language – have perspectives, thoughts, and desires all their own and have the right to have those around them understand and respect it. The sentiment is that a person never does anything for “no reason” – an autistic kid who head-bangs doesn’t bang their head on things for no reason, there is a reason for that action and if you can find it and stop the cause, you might be able to make them comfortable enough that they don’t have to bang their head any more. The sentiment is also that there is almost no case where someone has “no way” of communicating distress, discomfort, etc – even if they cannot use language or AAC, they can emote and act in ways to try to get their message across. I want to be perfectly clear: I completely support this sentiment. I agree with it entirely.

Behavior genuinely does offer important insight into what’s going on in a person’s head, especially if that person is unable to express it to you (either due to not having sufficient emotional self-awareness, or due to language issues, or due to not having figured out what’s wrong themselves, or, or, or… there are lots of reasons why someone might be unable – or even unwilling! – to reveal what’s going on inside to others. And being unwilling isn’t necessarily a bad thing but that’s fodder for another post). If I am acting as I often do when I am anxious, odds are fairly good that if you respond in a way designed to reduce my anxiety, my mood will improve, even if I don’t know why or how or even that I am anxious (this happens to me sometimes – emotional self-awareness is not really my strong suit). As my mood improves, I will find it less necessary to do anxiety-relieving stims. This is the general idea behind “behavior is communication.”

And sometimes behavior is communication. Let’s go hypothetical mode that comes to mind because I’ve had it happen quite often in recent weeks: Let’s say I’m hit with a really severe coughing fit because I’m sick and have asthma. I can’t talk at all because I’m coughing so hard, and my face is turning colors and I am generally acting very distressed in my breathing (sitting up very straight, bracing myself against something so I can get a better posture for breathing and coughing, face screwing up in my I-can’t-breathe facial expression, etc). If I can tell this is just a normal illness coughing fit and not a dangerous asthma one, I might nod or give you a thumbs-up sign or wave at you with my hands or something until the fit passes to try to communicate with you that I am not in danger. I can’t talk or use AAC right now, but thumbs-up: I am okay, this will pass. I am uncomfortable and distressed, but not in danger. Please don’t worry.

But, and here is where my issues the phrase begin, sometimes behavior is not communication. Returning to the same coughing fit: I am not trying to communicate with you my distress at my breathing when I cough. I am, to be a bit crude, trying to clear the gunk from my lungs. The purpose of coughing is not communication, it’s to preserve breathing ability. Not all behavior is communication. Likewise, I flutter my hands when I am happy. Is that communication? No. It’s just something I do when I’m happy, it’s how my body emotes. Can you use it as input for your communication with me? Yes. But that doesn’t mean my natural body movements are, themselves, communication. I would flutter my hands just as much if I was alone in a room by myself. The hand flutter is not designed to share meaning or thoughts with you. Sometimes behavior is just behavior: a cough is a cough, a hand flutter is a hand flutter, a fidget is a fidget. It’s not intended to communicate anything with you. There is a reason for it, but that reason is not communication.

That does not mean that non-communicative behaviors should be ignored – if I’m coughing so hard that my face turns purple and I can’t talk, please do check on me! Or if my hands are fluttering in my happy way, it certainly won’t harm anything for you to take that as a cue that I’m happy.

What it means is that not everything I do – or any other person with a disability does – centers around you and trying to impart information to you and trying to get you in particular to do something. And this one of my problems with the phrase “behavior is communication”: it is very self-centered. By re-framing someone’s actions as “trying to communicate something to me,” you are basically writing their entire existence to center on you – your actions, your thoughts, your feelings. And the fact is, someone else’s life does not center on you. It centers on them, and that’s okay, just like it’s okay that your life centers on you.

Another issue is that by assuming that someone is trying to communicate something to you with a behavior, you can blindfold yourself to what is actually going on. Say a person is very upset and crying and melting down and biting their hands. If you assume that biting their hands is attempted communication with you, you might think “maybe her teeth hurt, and that’s why she’s so upset!” or “maybe his hand is sore, and that’s why he’s biting it!” or any number of things centered around the person’s mouth and hands. By assuming it’s a purposeful behavior designed to communicate information, you’ve obscured what’s actually going on: Maybe the person bites their hands when they feel ashamed and is melting down because they accidentally broke something special in another room.

Or, lets say there is a person who has a particular hand fidget before they start working on something involving fine motor coordination. If you assume that the hand fidget is about communicating to you, you might think maybe they’re expressing eagerness for the activity, or maybe think that they’re bored and fidgeting because they don’t want to do it anymore. Or, maybe, you think their hand is uncomfortable and start wasting energy for more sensory-friendly stuff to work with when the current stuff is just fine. But maybe the person has sensory and fine-motor issues, and the hand-fidget lets them know where their fingers are (this one is pulled from me – I have a particular hand fidget that I do before I start fine motor work, and I need to do it so that I know where my fingers are). By assuming it’s all about you, you’ve again missed the point of the behavior.

A third example, one I think I’ve used another incident related to this in a blog post before: When I was a kid, I had a thing where having a sore throat was interpreted by my body as an itchy throat and the only way to make the itchy feeling go away was to do a sort of throat-clearing noise. It was a loud and very annoying noise. One day, I had a really bad throat (it was strep throat, turned out) and I was clearing my throat all the time. Literally, at the height I was probably making the throat clearing noise every ten seconds or so. Imagine that for like eight hours straight. My family was understandably aggravated. My parents got really annoyed – what is it, what do you want, stop making that noise, do you want my attention for something, go to your room if you’re not going to stop making that noise. By assuming it was about them, they missed the fact that I was sick. We spent the whole day fighting over the noise and why I couldn’t stop making it, as my throat got worse and worse and I made the noise more and more. Finally, my mom offered me a sore throat lozenge. I’m not really sure why she did – maybe she thought it would shut up the damn noise if I was sucking on something. Once the lozenge took effect, I realized what the problem had been and told her that my throat felt a lot better now. “Now?” – cue my throat getting looked at and oh, geez, we feel really bad now because your throat is covered in blisters, it must really hurt, no wonder you were acting funny all day!

My point with these examples is that by taking a self-centered assumption, you’re setting yourself up to misunderstand and misinterpret non-communicative behavior. If someone is doing something, it might not be about you.

My last issue with “behavior is communication” is that assuming that behavior is intended as communication neglects the disabled person’s agency, by assuming that everything they do centers on someone else. You are essentially assuming that the disabled person has no life outside of you, and there’s no reason why they would want to do something, unless it applies to you. I’m sure I don’t have to explain why I think that’s a problem, but I will just to belabor the point a bit: People with disabilities are people, with rich and varied lives, both internally and externally. The vast majority of what I – or anyone else in this world – does is things that do not center on one particular person.

My point is this: Behavior can be communication, but isn’t always, and to assume it is always communication is disrespectful to the person you’re dealing with, self-centered, and setting yourself up for misunderstandings. A better way to look at it, rather than the absolute “behavior is communication,” is to think “behavior always has a reason.” That’s an absolute I can get behind – because behavior does always have a reason, even if the reason is really quite simple, like me petting the fleecy blanket because I like the feeling of fleece.

Signal boost: Walk in Red for Autism Acceptance & Tone it Down Taupe

Because I have no idea whether I’ll feel well enough to participate tomorrow. Protest harmful “awareness” by Toning it Down Taupe this April, and rather than Lighting It Up Blue for autism fear-mongering, Walk in Red for Autism Acceptance.

If you have any questions about what either of these are about, please ask on the pages I’ve linked. I normally would be happy to explain, but I am genuinely really, really sick right now and not feeling up to much of anything.

chronic illness whine

Having a chronic illness is really annoying in one respect that is hitting me right now: I can never just get a cold.

No. A cold is not just a cold for me.

It’s a cold plus an asthma flareup.

Or a cold plus a sinus infection.

Or a cold plus a chest infection.

Or a cold plus all of the above, with bilateral ear infections thrown in for funsies, like I have right now.

If you have no chronic illness, think of all the times you’ve caught a cold in the past year. Now imagine that because of complications related to your chronic illness, every cold took you between twice and four times as long to recover from.

Welcome to my life, and that’s why I wash my hands so damn much and bring lunch from home every day during cold/fu season.

Because when it fails, I feel like crap for weeks on end.  And because med side effects are a thing, I’m stuck in a holding pattern of bad enough I feel like crap, not quite bad enough to warrant taking the next level of treatment to it. I just love hanging out in the nowhere land of “too bad for sick plan, not bad enough for prednisone” when my symptoms are bad enough to suggest bacterial but not quite bad enough to try antibiotics for another few days unless things get worse.

Not in a good mood today – I hope I’ll be more like myself next time I post. About the only thing worse than feeling like crap is feeling like crap and being unable to do anything about it except wait and see. I hate waiting. Especially when I’m sick and what I’m waiting on is whether I get better on my own or have to take meds with side effects that make me more miserable so that I can force the issue and get better. Argh.

When I am lazy

Just because I feel like posting something light-hearted, I thought I’d make a post about what I do when I’m being lazy with my schoolwork. This is what laziness looks like in me (science and engineering types may relate – especially those from places with harsh winters):

  • 9 pages of calculus to derive and equation I need from first principles because I don’t want to go to the library to get a copy of the course textbook because that means going outside when it’s -30C out.
  • Using my scanner to photocopy the special report paper my assignments have to be completed on  because I don’t want to go back to campus to pick up the pad I forgot there.
  • Two hours of calculus so I can avoid leaving the building to pick up my notebook to get an equation I need for an assignment
  • One hour of Excel programming so I won’t have to solve an iterative problem by hand… which probably would’ve only taken 20 minutes or so to solve by hand but I refuse to be a human computer, damn it, that’s what computers are for.
  • Two hours of programming to solve the general case of an assignment because I resent assignment that consist of forced practice… when just doing the assignment probably would’ve only taken a half hours.

And so on. In general “me being lazy” consists of me refusing to do things I find outrageously tedious (e.g. iterative problems by hand, forced practice of the same type of problem over and over), or avoiding going outside in cold weather. I can and will often go to great lengths to avoid doing those things.

What do you look like when you’re being lazy?


Intro: #HighFunctioningMeans – and its siblings, #LowFunctioningMeans and #FunctioningLabelsMean are trending on Twitter right now. For insight into what neurodiverse people really think of functioning labels, I suggest you check those tags out. I participated in the hashtag, and in my usual verbose way, I realized that I’d completely flood it if I posted all that’s in my brain, but I’m perseverating on it so I decided to turn it into a post. 

Content note: There are some offensive views I’ve written about in a first-person sense for reasons of satire. Content note for ableism and abuse. 

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Perfect is the enemy of good enough

Like many autistic people I know, I’m prone to looking for the one right social solution.

But sometimes – many times, there is no perfect solution. Especially in tough situations, there’s often times when you can’t avoid pissing someone off – or hurting someone, for that matter. Unless you let yourself be hurt, and in some cases that’s not doable, either. Sometimes you’re stuck in a situation where you have no choice but to hurt someone and it’s up to you to find the least bad option. Good luck.

I’m in such a situation, in my meatspace life. And I can’t talk about it because it’s confidential. But, suffice to say, I’m pretty sure there is no “right solution” to this particular social problem, and that makes it difficult.

Social skills books and exercises and classes and what have you lie. They pretend as if all situations have a right answer and if you know the rules well enough, you can find it. But people aren’t like math. You cannot simply derive what you need from first principles.

You just muddle along as best you can and hope you don’t screw up anything irreparably.

And that’s where I’m at.

I am sad.

I had intended to write and post something yesterday. About yesterday. About Melissa and Isaac and Caitlin and Olivia, and Zheng and Faryaal and Zain and and and…

I can’t. My words aren’t working.

I am sad. Desperately sad.

Often I get angry. Anger is easy for me to write from. It clarifies, it makes my words come swift and hard and strong. Sadness weighs me down. I can’t write from sadness. Not well. Not in the way they deserve to be written for.

That is why I reblogged other posts. Because the names on this list weren’t just names. They were people. People who I wish so badly weren’t on a list I wish so badly didn’t have to exist. If they have to be on that terrible list, they deserve honor and remembrance and, yes, anger on their behalf. And I can’t do it. Not this year.

I have said in the past that I want a world where our murders are recognized as such. But that’s a lie. I don’t want a world where people condemn our murders. I want a world where the murders and abuses never happened.

I want a world where the Disability Day of Mourning doesn’t exist because it doesn’t have to. I want a world where Matthew McCabe plays happily with his little boy, where Isabelle Stapleton has a loving mother, where Alex Spourdalakis is sixteen this year, not forever fourteen.

And I didn’t post yesterday because that sentiment feels very selfish. It’s not about Ayahna or Vincent or Randall or Marian. It’s about me. And the Disability Day of Mourning isn’t about me. It’s about them.

But I am sad.

And I Am Telling You

I am unable to word an appropriate post for the Day of Mourning, but this one is worth reading and expresses my thoughts better than my sadness today is letting me.

Any death is one too many, and this past year there have been more than most.

the fool on the hill

I was going to try and be really highfalutin’ with this post. I was going to ask my roommate the English major about Lacanian theory and semiotics, and explain that. Then I’d make some allusion to the fact that we all perceive words differently, and it can sometimes mess up discourse on a fundamental level. Then I would tie it back to the fact that the word ‘disability’ is routinely interpreted as something hugely dire by the non-disabled, and explain that ‘disability’ is in fact a social construct. Then, to close, I’d make some quasi-profound point about how we could all do a bit better at understanding that we all have different perceptions.

But today is the Disability Day of Mourning, and I’m not going to do that.

I’m going to tell you that since the 2014 Disability Day of Mourning, at least 20 more autistic and neurodivergent…

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