Why I “interfere”

I recently read an article by an autism parent blogger who railed against autistic advocates and asked how we dared “interfere” with his parenting by protesting ABA or telling our experiences or questioning the cure narrative. I don’t want to link to that article because the person in question has shown that he has no intention of listening to an autistic person about things, and because I don’t want to invite a hoarde of anti-neurodiversity zealots to my blog. But I thought the question itself deserved explanation, so I figured I’d write something about it.

I interfere, sir, because I grew up undiagnosed. Because my parents, despite their best efforts, made mistakes in raising a child with disabilities. Because my experiences of occupational therapy and remedial training on certain skills ranged from completely useless to downright traumatic. Because I learned the most useful skills from my autistic friends, not from any social skills class or occupational therapy. Because I know I had it relatively easy compared to my peers who were diagnosed in early childhood. Because I don’t want your son to experience what I did.

I interfere because I think you, and people like you, will benefit from hearing the perspective of the receiving end of those therapies and treatments. Because I think you should know red flags of abusive treatments. Because I think that you should be thinking about risks versus benefits, and what kinds of “benefits” are benefits you actually want, and what kinds of risks you’re willing to tolerate for what kinds of benefits.

I interfere because, for me, hand-over-hand (I would like to draw a line at this point between “helping someone, with their consent, to move their hand/body through a motion so they get the feel for it,” and “hand-over-hand” as used in my therapy, which was always “grab the kid, forcibly restrain them, and then force their body to do what you want it to do, when they are actively not consenting or willing, and when they have no idea what is happening or why.” The first is something that I will do, always with consent, with kinesthetic learners. The second is something that was done to me, and it was called hand-over-hand) was uniformly traumatic. It hurt, it took away my autonomy, it was frightening, it made me helpless. I screamed and cried during hand-over-hand, not because I was being willful or defiant as my parents and teachers and therapists thought, but because I was terrified and hurting. And my parents, my teachers, my therapists – they were the ones causing the terror and pain. And they thought they were helping, but they weren’t. I interfere because what I learned from hand-over-hand was not how to do the skills they were trying to teach properly (I am 27 and I still can’t write my name in cursive or sew a button or etc, obviously their occupational therapy to try to teach me cursive and other fine-motor skills failed abysmally), but rather that my pain didn’t matter, that my fear didn’t matter, that my body was not mine, and that might makes right.

I interfere because  I remember being helpless and in others’ control, at their mercy. I remember being thought of as willful or defiant or non-compliant or bratty when I was actually scared or in pain or exhausted or just bored to literal tears after hours of monotonous tedium. I remember what it felt like to be locked in an isolation room when I couldn’t do something to others’ satisfaction. I remember what it felt like when my parents flat-out refused to believe or investigate teacher abuse of me (they refused to believe for 14 years, when a classmate of mine told them stories about what she would do to me. And then they blamed me for not telling them, just as they’d blamed me at the time for “making” her abuse me). I remember too well what it felt like when my parents accepted others’ characterizations of me as lazy, or careless, or just not wanting to succeed. I remember too well what it felt like when I was scapegoated for anything that went wrong in an interpersonal situation. And I remember too well what it felt like when other people thought it would be easier to try to restrain and yell and scream and hand-over-hand my disabilities out of me than accommodate them and create an environment in which I could thrive.

I don’t want to call all the shots in your parent-child relationship. I want you to listen to those with relevant experiences- to me, to other autistic people, etc – and to think about what you’re doing. I want you to think about the potential consequences, about what’s best for your kid, and what is a true deal-breaker for you. I want your generation to avoid making the same mistakes with your kids that my parents’ generation made with me. I want you to learn from their mistakes without having to repeat them yourself, and to make the best possible decisions for your kid. And that’s why I “interfere.”

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. 

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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.