Behavior is communication.
This has become a catchphrase in the autism community. And for good reason. It’s certainly true.
A child runs from a store and experts assure the frustrated parent that behavior is communication.
A parent asks for advice about why their recently diagnosed child bursts into tears at bathtime and experienced parents nod in sympathy. “Behavior is communication,” they say.
A child refuses to eat anything but raw carrots and pancakes and the child’s occupational therapist isn’t the least bit surprised. Behavior is communication.
A child flaps at a wind-up toy that’s stopped moving and the experts . . . somberly intone that the child doesn’t know how to communicate . . . that he isn’t aware of the adults around him and is “trapped in his own world”, unable to share his joy with others.
An adult walks away from an autism researcher who is treating him as less than competent, preferring instead to tend his garden, and . . . cue the tragic music as the researcher looks on gravely and the viewer is made to believe that the autistic adult simply doesn’t know how to have a proper conversation.
What’s going on here?
Why is certain behavior treated as communication and other behavior treated as a failure to communicate, often in the same person?
Somehow a phrase that started out as a positive step toward understanding autistic behavior in the absence of language has become associated primarily with meltdowns, self-injurious stimming, eloping and other obvious signs of distress.
Why is that? Do autistic people only communicate distress through their behavior?
In case the answer to that question isn’t obvious: No, we communicate a whole range of emotions and messages. But much of it seems to get lost in translation.
That toddler flapping at the wind-up toy? It looks to me like he’s saying, “that was fun, do it again!” It’s not his fault that the so-called experts in the room don’t speak autistic as a second language.
Going Beyond the Obvious
Meltdowns. Elopement. Biting. Hitting. Crying. Refusing to eat certain foods. These are not the only autistic behaviors that are communication.
Stimming is communication. It’s not enough to simply assume, “this person is stimming so they must be stressed or anxious.” Sometimes stimming is about anxiety or sensory overload. But it’s about so much more than that, too.
My stims are a language unto themselves. I have a stim for every mood, and while the physical movements may sometimes be similar, the feelings that go with them are distinctly different. My happy flapping is different from my grossed out flapping. My excited bouncing is different from my nervous bouncing. The autistic body is constantly communicating and it’s saying so much more than “I’m in distress.”
“Lack of communication” is communication. Autistic attempts to interact with others are often overlooked because they are atypical.
Did you know that an autistic person may express interest in something by studying it for a long time rather than directly engaging at first? Many of us like to understand how all the parts of an object work or how a person responds in different situations before we feel comfortable interacting. And persistent questioning, monologuing, or echolalia–often dismissed as unidirectional communication–are all signs that an autistic individual is seeking to connect.
Eye contact (or lack thereof) is communication. But it’s not the kind of communication that most people assume. If I’m staring off to the side while you’re talking to me, that’s a sign I’m intensely concentrating on what you’re saying. And if I’m making intentional intermittent eye contact? I’m more focused on “passing” to avoid looking odd than I am on listening to what you’re saying.
And that’s just one simple example of how using a neurotypical “dictionary” to interpret autistic behavior and body language can lead to chronic miscommunication. Understanding that behavior is communication is a good first step. But it’s not enough to look at autistic behavior and guess, based on neurotypical experience, reasoning and cultural norms, what that behavior means or doesn’t mean.
Only through accurate translation of autistic behavior can real communication occur.
For that to happen, autistic individuals–including autistic children–need to be allowed to communicate a broad range of messages in the ways that are natural for them. Forcing a child to make eye contact or to stop flapping is the equivalent of forcing them to speak a foreign language. It’s telling them that if they want to use behavior to communicate more than distress, they’ll have to speak another language because theirs is substandard and the people around them can’t be bothered to learn it.
“Behavior is communication” has to apply to more than just a small subset of behaviors or it’s no better than “quiet hands” masquerading as acceptance.
This post is part of the 2014 Autism Positivity Flash Blog happening today
Musings of an Aspie 
great post and for people who don’t yet know – the same stim can have as many meanings as their are people stimming 🙂
Exactly! There is no one size fits all interpretation of a particular stim. It takes time to learn any person’s body language and nonverbal communication, autistic people included.
I really appreciate this thought. Thank you for putting it so succinctly Emma.
There’s so many people and sites say “hand-flapping” or shaking, is an expression of joy, and speak about that like that’s exclusively what it is.
When I was little, I used to shake my hands vigorously when I was overwhelmed, or upset. While I also did that when I was enjoying something so much I needed a moment, and movement, to help collect my thoughts, this was less common than when I was upset.
While I don’t know if I’m autistic or not for sure, I had been counting my different variety of hand-expressions as a mark against it, an example of me just being weird or broken maybe. It’s nice to think that I can drop that separation, and even if I’m not autistic that it is just a variation in human expression, not that there’s wrong with me for not having the same expression as others.
Yes! Even among autistic people there is a lot of variation in nonverbal expression. My flapping is almost always a sign of upsrt or panic and I was confused at first to see so many references to happy flapping.
I love this post. I wonder if it would help for people to consider nonverbal communication in general – in everyone – as a more significant source of information and inquiry than maybe they currently do. It’s not as though verbalized feelings in the general population always reflect true feelings – far from it. Somatic responses tend to be the truest to the source, don’t they, with verbalization often involving a kind of intellectual balancing act between truth and a front, self and surroundings? Maybe if people were more sensitive to body language in everyone, they would enhance their sensitivity to those on the spectrum, because their intuition would be more engaged? In any case, this post has brightened my day. Some of these things I think I’ve already known, just having a sense for them, but your translations are great and helpful and I will keep rereading them.
The weird thing is that people do generally consider nonverbal communication as a significant source of information. Literally one of the first things I learned in a a business communication course was that 80% of communication is nonverbal and the course spent a great deal of time detailed all of the ways that people communicate nonverbally and how to interpret various nonverbal signals. Ironically, that was one of my first clues that I’m autistic because I was like, “whoa, people notice this stuff?” 🙂
I take your point, Ms. Kim – although I still feel there’s an issue with nonverbal communication in general that I’m failing thus far to articulate. It’s notable to me, for example, that the issue was taught so extensively in the course you describe; that likely wouldn’t be necessary if we (NTs) were all super-conscious experts at it all the time. I’ll keep thinking and see if I can pin down what I mean.
Okay, I’m not doing too great at reading between the lines these days so it may be that I’m totally missing your point. 🙂 My receptive language is a bit of a mess.
I’m sure my own muddled state is to blame. I had to say goodbye to the kids at my internship yesterday, and I’m worn out from the preparations and emotions of that. It’s important for me to keep thinking – I hate when I miss my own point! : )
P.S. I hope the move has gone well!
It’s going well, thank you. Our stuff is supposed to arrive tomorrow and I can’t wait. I’m so disoriented without my stuff! 🙂
Professionally-diagnosed mild ASD boomer here.
For which autists should others be expected to read their behavior?
Under 13, sure.
Under 25, hmmm. Family, sure
Adults–family, maybe.
As we autists mature, we should expect fewer people to have to speak our language. YMMV
Off-topic: I do a lot of couples dancing–ballroom and country. The lead in couples dancing is physical communication (the imperative) and is behavior. Body language, facial expressions, and tone of voice are also non-verbal communication.
This post is mainly aimed at the people who spend the most time around a person, so family members, teachers and other professionals, I suppose. I know that my family can read me really well, right down to knowing when I’m going into shutdown or sensory overload, often before I realize it, and I’m so thankful for that.
That’s an interesting topic indeed! I guess some of the lecturers at university must be confused or annoyed by my way of fiddling with pens (including poking holes in the air with them) and bobbing up and down on my chair when exited or wanting to discuss a topic, because it’s almost the same thing I do when bored out of my mind or not feeling well (minus the poking movement, and more a constant shifting of position than bobbing). One of my professors is able to tell when I’m really interested or totally lost because I’ve been in her classes for four years now, but still I can make her believe that my “I’m very confused because I didn’t pay attention” expression means I just need some more time to think of an answer 😀
My professors routinely thought I was confused when I was concentrating or thinking something over, so I laughed when I read that you have the opposite issue. A few times I had to outright tell them that “this is my concentrating face so just ignore it.” 🙂
Somehow concentration and confusion seem to be easy to confuse! Hm, I should tell the people at university to feel free to ignore my weird grin – often I grin like crazy when I make a connection between two subjects and feel excited inside because I figured something out, and some profs believe it means I want to say something (which is not always true) and act as if I had held my hand up. Yet again, sometimes I use this fact for my purposes, because I don’t want to be the only one with my hand up all the time (are all the other people lazy or disinterested?) and some profs don’t like it either because it seems to scare off other students.
Some time around 3rd grade I started to put a mental limit on how many times per class I could raise my hand so I wouldn’t have it raised for every question, because apparently that’s annoying. 🙂
I was the opposite – unless a teacher directly asked me a question there was no way I was going to volunteer an answer! I like to be invisible and anonymous 🙂
I’m the same way now. I think I learned over time that it was easier to be invisible in class.
My facial expressions are confusing as well. My over-the-top-so-excited-because-LOOK!-look-at-the-conections-look-at-the-new-knowledge-THAT-I’M-ABOUT-TO-RECEIVE-tell-me-more-(freeze-my-body-so-I-don’t-distract-the-giver-with-excessive-body-movements-and-fast-talking) facial expression seems to get confused for my I-think-you’re-a-stupid-idiot expression. I got fired from a job because of the confusion. And blackballed from working in the field locally. Conveinently enough, my I-think-you’re-a-stupid-idiot expression gets confused for I’m-disappointed-that-it-didn’t-work.
That last part made me laugh so hard. What a fortunate coincidence.
It sucks that your atypical expressions got in the way of work. There’s so much emphasis put on having the right body language, especially in customer-facing positions. Maybe that’s why so many of us prefer computer-facing jobs . ..
O WOW! I might get a card made up that says THIS (Thanks Sg poster…this made me laugh for a long time…)
“my I-think-you’re-a-stupid-idiot expression gets confused for I’m-disappointed-that-it-didn’t-work.”
I have a few different versions of the sideways head “look” and also find myself glad they get mixed up in translation by others…
I might have gotten my ass kicked a lot more often if it was more obvious what I am thinking.
I love this post! Especially the foreign-language metaphor for forcing someone to stop flapping.
And thanks for reminding me of the Flashblog, I’d totally forgotten – I just posted my post for it.
Yay! I’m so glad you’re participating. 🙂
Yes, yes, yes and yes! Another perfect post. And the eye contact thing? Exactly.
❤ Thank you.
Very good post especially about similar stims meaning different things depending on the nuances. Every day im still learning and filing away. So far E may do the exact same things but when agitated vs ok he adores them more, and more feverishly/intensely. Eg he stims on pulling out DVDs (which drives grandma bonkers but thats another topic), opening them, looking at the DVD itself and moving on to the next. On a good day i can redirect, or tell him no, or remind him to look at 1 then put it back…on a bad day it’s pulling them out one after the other quickly making a pile in the floor, doesn’t stop when asked, or replace them…physically moving and redirecting doesnt work either as soon as i set him down he makes an immediate beeline back and feverishly opens as many as possible before I can get to him to redirect again. Unfortunately, though I can recognize when something is bothering him, 9/10 times im still clueless what it might be 😦 anyway fantastic post! If I managed to submit right i should have a short picture/text one sometime today about non verbal communication of love.
Oh, I wonder if he likes the snappy noise/feeling of popping the DVD out? Maybe you could find something with a similar snap-on action that he’d enjoy just as much that wouldn’t make such a mess. 🙂
Glad you’re participating in the flash blog today! We need to send April out on a positive note.
It doesn’t seem to be that, though I wouldn’t rule it out…he opens them (he does currently have a fascination with hinge/pivot joints) and then studies the DVD itself…most of the time he doesn’t try to remove them.
Oh, got it! I guess he really likes the dvds. Maybe you’ve got a future graphic artist on your hands there.
😉 not sure whether it’s the words or colors or designs or all 3…i dont mind him doing it if he doesn’t remove them or puts them back…but my mom is on the warpath about it
you’d think she’d be more upset about my dad w dementia “fixing” his motorcycles but meh (we just ignore her and i let him when she’s not home lol)
*does not adores
cant edit on ipad
This is so true. I always look forward to your posts as a voice of reason as most Autism articles, talks and news reports depress the heck out of me and make me feel misunderstood- I click on them for help and end up in tears…but your blog always makes me feel safe, valued and understood..plus I feel my “normal” and intellectual too…core qualities that are important to my sanity:) This is just what I needed to hear. Sometimes I want to give up fighting for our rights and leaving a voice in places where all the voices are not being understanding but then I read your posts and I think how could I NOT leave some hope in hopeless places if I can for those like myself who read yet are more vulnerable? Anyway, I can be a little Idealist and an Advocate and your posts aid me with that. Thanks again for this wonderful piece that I can forward to family and friends for the future of my kids!
Seconding the fact that this blog, as well as a few other ‘places’ (like the Girl with the Curly Hair project on FB), are the only resources I’ve found that don’t confirm all the little depressive voices that say, “You’ll be a harm and a burden forever, and only the pathologically generous will want you around.” If there weren’t a few voices speaking out about finding ways to flow in life, life would be a much darker place!
And your blog! ❤
Ha, if I remember to write for it! Something to put on the calendar…
Awww. thank you. I have those days too and then I’ll read something on someone else’s blog and get recharged. And you’re right, those of who have the energy and ability to speak out need to keep on doing it, even if we’re sometimes seen as hopeless idealists. 🙂
Thirding Kmarie, especially after reading aspies shouldn’t have a positive spin put on their traits in case they think they’re superior beings when they are in fact a burden. Is it not possible to be inbetween?
Love this post: great to read a perspective that isn’t about NT body language. I also like the language metaphor: we’re speaking in autistic and people are listening in NT.
Yes I love how you both put that…the language metaphor! I am going to use that I think!
I’ve got a feeling I adapted this from something Terry Pratchett wrote, but I can’t remember the reference right now. Something involving the Librarian, I think.
From Men At Arms 🙂
“Consider orangutans.
In all the worlds graced by their presence, it is suspected that they can talk but choose not to do so in case humans put them to work, possibly in the television industry. In fact they can talk. It’s just that they talk in Orangutan. Humans are only capable of listening in Bewilderment.”
I had a feeling you’d be the one to locate the reference. One of your super powers. 😉
I have Google fu. 😉
Beautiful conversation is beautiful! *flaps happily*
Thank you, Alex. You summed it perfectly. I need to read your post for the flash blog and so many others. Hopefully this weekend!
Gosh, this makes me wonder what, exactly, I am communicating? A girl in high school once told me that she could practically read my thoughts because everything going on in my mind showed in my face, but the thing is that when she pushed me to tell her with words I choked. I have no idea what I’m saying when I’m not speaking. I think that I have been repressing myself for years. I hear these words spoken and echoed all over the place but I guess that I was trying to be invisible.
I totally understand what you’re saying about trying to be invisible. And I often feel like what I think I’m communicating and what people are “hearing” by way of my body language are completely at odds with each other.
Great post – I’m really glad you addressed this. I think it ties in with the well-meaning but ultimately condescending pity that being autistic “must be so hard” and we must be in distress a lot, because our neurology is “preventing us” from enjoying enjoyable things. No, I’m happy being autistic and I genuinely dislike parties.
Your eye contact translation is just the same for me too. And I also spend time observing before engaging, even when I’m very interested. When I was a kid/teenager, I would observe other kids for a long time before talking to them; I wanted to have as much information about them as I could going into the encounter. I’m also likely to heavily research a video game or movie before simply trying it.
I’ll add a couple of my own behavioral translations: If I’m squeaking, then I’m excited and comfortable around you. If I stare at someone for a long time, it’s because either a) it’s my boyfriend and I’m very comfortable around him, or b) I’m not really seeing them. If I’m only gingerly touching a gift I’ve just recieved, it’s not disinterest – I’m trying to be careful because I like it.
That’s a great point. So often, distress and suffering are the default assumption.
I’m also likely to heavily research a video game or movie before simply trying it.
I spent 45 minutes researching nonslip stair treads this morning. 🙂
And I do the staring but not seeing thing too! It gets me in trouble sometimes because it comes across as rude (aggressive?) or spacey.
Me too! I always used to be hit or kicked by my sister at the dinner table as a kid because I wouldn’t quit staring.
Well, it makes sense to have all the information before you buy something! Otherwise, you might have to take it back to the store, which means another errand and potential sensory overload.
I’m pretty sure people have thought I’m aggressive cause of the staring thing. I tend to have a pretty serious looking neutral expression. I remember being told as a kid that it’s rude and I should stop staring, and I’d say “I’m not staring at them”, and people would think I was being obstinant. So many tiny miscommunications happen from speaking 2 different languages.
My neutral expression is very serious too. I think it’s in part a form of social self-defense. I’ve found that if I’m not “very serious” I apparently project “please bother me with small talk and cheap come-ons” and that gets tiresome fast. 🙂
O this….a million times THIS: “My happy flapping is different from my grossed out flapping.”
🙂
I really like this. Great post. NTs seem to think everything should be done their way. They don’t think that they do anything other than be straighforward, but I think that leaves them to be too simplistic in their interactions. They do learn some non-verbal cues but many more can be learned by them. For instance, they can usually spot a fake smile. They may not be able to tell you what is fake about it, but they do know instictually.
Just because I’m stimming doesn’t always mean I’m overloaded either or nervous. Often I stim to concentrate or relax – if I can control that one part of myself then the rest of me can let go (moving my legs in bed so I can go to sleep). If I’m not looking at someone when they are giving me directions, I often am in the process of memorizing (I don’t need/want to be distracted by their tics or mannerisms).
I’m sure your frustration is entirely justified, Cecilia, and I’m sorry that that’s so. Just a humble reminder that not everyone is the same, “NT” or no. “Neurotypical” is a deceptively broad term, I think, and one I use reluctantly, always with a pang.
The more I think about this, the more bothered I get. Why do the people with the communication impairment have to learn a second “foreign” system of communication? This seems a bit backwards. (and yes, I know it’s because the “second” language for us is the dominant language in our society)
Learning about something before directly engaging…Very familiar. When my chorus group began to work on a medley from Phantom of the Opera, I went on Wikipedia and learned about every version ever made. Then I watched the 20s version and the musical on Youtube and read the book. (Then I got the solo.)
Yay for getting the solo! Way to prepare like a boss. 🙂
Phenomenal. Every teacher, caregiver, therapist, family member – anyone who has daily interaction with autism should read this. ❤ You've done an amazing job here.
Thank you (I’m blushing)
Reblogged this on Insight Out.
Thank you for the reblog
Pleasure, enjoying reading through your blog.
🙂
Great post, like the ref to the documentary.
In one of your comments – ” 80% of communication is nonverbal”, I have heard this many times myself but could not see it, seems there is a reason. However, do you know how they got to this figure because I do not believe it, is it that “they” who come up with this do not understand 80% of what is going on if they cannot see someone, are they permanantly bewildered, do not listen properly or what? Does anybody have any ideas if this 80% has any scientific basis.
I just find it strange that if 80% is non-verbal why do we have such a rich spoken language, thinking about not only English but Greek and Latin and many others, why do we need all these words to be able to communicate effectively. Or is that my aspergers talking.
Perhaps it’s partly based on the fact that we’re not talking every moment but are *being* every moment?
The statistics (and they vary from 65% to 93%) seem to date back to some 1960s studies. Apparently in the sixties there was a big interest in AI and developing robotic semblances of humans, which would need to have appropriate nonverbal communication skills to pass for human. The percentage figures come from studies in which researchers tried to quantify verbal and nonverbal communication in situations where the messages were incongruent. Not sure what methods they used but you could probably search on Albert Mehrabian to find more details.
I found an interesting (and scary to me) quote from him: “When there are inconsistencies between attitudes communicated verbally and posturally, the postural component should dominate in determining the total attitude that is inferred.” Yikes. I think incongruence between verbal and nonverbal communication is a big problem for most autistic people because many people really do believe that “body language doesn’t lie” or something along those lines.
YES! Great post as always!!
This post really reminds me of a wonderful talk and poem I saw on youtube by an amazing writer who did many blog posts about this specific subject. For her personally she was exploring the emotional problems that came with her being taken to a speech therapist to learn to stop stimming/talking a certain way as a child, which went on to many anxieties during young adult life, until she finally came to a place where she thought ‘well damn it, in the end I just dont see why I have to work around everyone else, why can’t others work around me?’. I’m going to look for this talk on youtube and share on here, I wish I could remember the name of the writer, she was so great!
Thank you! If you think of the writer’s name, please come back and let us know.
As always, thank you for another tremendously insightful, thoughtful and very helpful post. As the neurotypical dad of a wonderful 13-year-old Aspie the timing of this particular topic couldn’t be any better!
First off, my apologies if my comments inadvertently go off on a tangent from the focus of this blog entry. That’s not my intention. However, I’m at a loss about how I can help my son deal with his anxieties – which frequently manifest themselves by him running around outside the front of our house, hair twisting, and subtle OCD behaviors.
In a nutshell, he has been seeing an occupational therapist to help with his fine motor skill issues; a psychologist to deal with his anxieties; he has a classroom aid; is on a modified school curriculum; plus he’s been attending social skills courses. He also has a “quiet” room at school (the resource room) where he can take refuge when it gets too noisy. In many respects we’ve got him covered to the best of our abilities and knowledge. He also swims each week at the local pool and takes Kung Fu lessons – both of which he loves – so he’s physically active. All in all he’s a pretty easygoing, level-headed teen and isn’t prone to adolescent “rages.” We also have an excellent father-son relationship and spend much time together. Likewise, his mother – and yes, we’re still married after 15 years – spends a lot of time with him.
Tying this all together with the “Behavior is Communication” theme, clearly the running around is his stress bubbling to the surface. As his parents we recognize it, as does his OT, and like many teens he tends to internalize a lot of his feelings. Until about a year ago he had stopped doing this behavior because his OT (who specializes in kids on the spectrum) had worked with him to help him control his internal levels of arousal. The hair twisting had stopped, too. (He used to flap his hands when he got excited, which I understand is fairly typical of Aspies, but that hasn’t resurfaced.)
At the best of times it’s not easy being a teenager, so I can only surmise that some of the additional stress that has appeared in the past year is simply what being a teenager is all about…changing mind and body. The difference, however, is how it shows up relative to NTs. So rather than try and apply another layer of “solution” upon my son by suggesting an additional family activity – such as playing board games – to help him unwind, I’d like to suggest something he can do on his own to relax and clear his head. Typically at the end of the day towards bedtime he likes to retreat to his room and read his comics, listen to music or watch his iPad. He needs that space and I respect that. My concern with this (particularly the iPad) is that it actually stimulates him even more: the images, music, movement, etc. He is an avid video game player but avoids the really violent games. And the videos he watches are typically about Sonic the Hedgehog, Minecraft and The Simpsons. In this last regard my son is a stickler about what is and isn’t appropriate for him to watch, so overtly violent videos are not a concern.
All that said – and thank you for letting me to carry on – are there any activities or strategies you can suggest that might help him better manage his levels of arousal when they’re elevated and which, in turn, may diminish the frequency with which he goes outside to run around. I understand that the running around is an expression of his level of stimulation, but I was wondering if you have any ideas as to how he might channel that energy.
Sorry for the length of this message…but thank you for any suggestions you might offer.
Sorry this has taken so long for me to reply to. I have a lot going offline at the moment.
The transition into the teenage years and then the late teen years can be especially hard. It’s not unusual for all sorts of new stims, sensory issues or other difficulties to crop up suddenly or reappear.
Are the things he does (running around outside, hair twisting) problematic? Like, are they harmful to himself or anyone else? If not, I’d say let him do it if it makes him feel better. Often stimming looks like an expression of anxiety to observers but the autistic person doing the stimming is finding it helpful or enjoyable. I guess what I mean is that you might be feeling more uncomfortable watching him do those things than he feels doing them. There are a lot of ways to unwind and cope with the stresses of the day and sometimes we just hit on some unusual thing that works during a certain period in our lives. My guess is that if it’s not injurious and you don’t comment on it, he will eventually shift to another stim or sensory seeking activity on his own.
Thank you, again, for the insight. And there’s on need to apologize for the delay – I really appreciate your thoughtful reply and that you took the time to write back.
His behaviours certainly aren’t harmful and I can see how/why he finds them comforting. My concern is that once he starts, they only serve to further escalate his level of stimulation. Then again, it’s not like he’s continuously doing them all day long so perhaps my perception is unfounded in that regard and that he has some kind of “braking” mechanism.
You made a good point about there possibly being some discomfort on my part. But that, I think, stems from having been an overweight, NT child who was constantly bullied and harassed – something no parent ever wants his/her child to go through. In this respect I’m diligent about biting my tongue and not nagging him to stop the running around or twisting his hair, because my emotional baggage ought not to be his burden to carry, too. Also, my experience was in the early to mid 70s when people/schools/teachers were much less sensitive to issues of bullying and inclusion. If anything, I could learn much from my son about being “…resolutely and faithfully what you are,” to paraphrase Thoreau. By far he is a much happier, more intelligent and insightful child than I ever was, which I absolutely credit to the wonderful attributes that his Asperger’s has given him. We always tell him the world would be a much better place if there were more people like him!
Also interesting about your reply is it made me realize that no matter how much I love my son just the way he is, and no matter how involved we are with him at home and school, it will always be a challenge for me as an NT to see the world as he does – and maybe vice versa. Then again, that could be said about anyone whether or not they’re on the spectrum.
I totally understand–I had a lot of the same feelings when my daughter was growing up. Of course she turned out to have totally different problems than I did as a preteen and teen. And she’s no autistic so I also get what you mean about there always being that gap in understanding. Fortunately we’ve gotten good at explaining things in a way that the other can understand. Plus, she speaks autistic pretty fluently. 🙂
It’s possible that by letting your son stim or engage in sensory activities to the degree that he chooses, he’ll naturally learn to self-regulate. As you said, he doesn’t do the activities continuously. I know that sometimes I have an intense need to stim and I have to let it run its course. Intentionally stopping it will just make the urge that much stronger. And while it might appear a bit manic when I’m doing it, I’m much calmer afterward.
Eventually, as his need for these specific outlets decreases with age (which it very likely will–remember how stormy the teenage years are, even for typical teens) he’ll probably naturally taper the running around or hair twisting. He’ll never stop stimming or sensory seeking entirely, of course, but he probably won’t be running around the yard when he’s 30 (er, mostly 🙂 ).
Reblogged this on humanitysdarkerside and commented:
My talking and singing to myself works like that. It annoys the hell out of some people and can embarrass my children, but these two stims are a force of nature. My medication lessens my anxiety stims but does nothing at all to my concentration, happy, silly – whatever other non-anxiety moods there are.
I think that’s something that parents would benefit from knowing actually – that medication may only affect a certain type of stimming. Some parents medicate their autistic child to reduce stimming (ack!) and might be puzzled by the outcome if only the anxiety stims stop.
I like what you say.
Thank you
I was talking to my daughter a few days ago about this.Hopefully reading this will give her a little more insight into are conversation. Great post.
I hope it’s helpful to her
THIS!! (Sorry for the really late comment. I’ve been massively massively massively neglecting FeministAspie for months. Going to get on top of things now though, at least as far as WordPress is concerned.)
I especially like the point about stimming also communicating positive emotions as well as negative emotions. Even with people who are supportive about the whole stimming thing and don’t try and stop it or mock me for it, I worry that they assume frantic stimming means that I’m having a bad time sensory-wise and just trying to regulate it. Of course, sometimes that’s exactly what I’m doing, but coming to think of it, most of my really obvious stims are happy ones. My “distress flap” is just a flutter of usually just the one hand by my side, subtle, pretty much always a conscious choice of “do that distress flap thing, it’s a distraction” and most people wouldn’t even notice. On the other hand, for me, the more stereotypical wild almost-involuntary all-over-the-place flapping means I’m feeling great, and also means I feel relatively safe around those people in that I don’t think they’ll judge me for it, so that’s also a good sign!
No worries! I was actually thinking about you a couple of days ago, wondering where you’d disappeared to. The note on your most recent post explained that, though. Since I’m rarely on Twitter, I didn’t realize you were so active there.
I didn’t realize that stimming can actually cause other people to have a kind of empathic distress until the other day when I read a comment on one of my videos. The commenter said that they almost turned the video off because my stimming looked so upsetting (I guess like I was very upset and so they were getting upset). But when I watch that video, I not only hardly notice my stimming, I also know that it’s a very calming activity. Like you, my distress stimming is often much more subtle.
I haven’t really been active on Twitter either, to be honest. Every so often I’d think “I should really get back to the whole FeministAspie thing”, poke my head into Twitter, and immediately run away screaming (well, not literally!). Long story short, a conversation had emerged in which I had thoughts about the whole consent thing, and then thought “hey, I could blog about this”. I’ll try not to disappear again. Sorry! 😛
Ah, I’ve missed your apologizing self 🙂
Thank you very much for your post! My son was diagnosed as autistic recently. And the doctor said that he has lack of communication. But actually that means that he does not recognize Matvey’s way of ‘talking’. However I recognize it as an autistic adult and I see that he is expressing his thoughts, wishes and emotions but does it in another way. And that’s not the wrong way. However doctors regard autistic way as the wrong one. Thus I was upset a bit untill I’ve read your post. That really improves my own mood.
The diagnosis of my son impressed me so much that I’ve even started to write posts in my blog to share my thoughts.
This is all so true. Your son is lucky to have you. And I need to check out your blog. 🙂
Thanks for sharing such a beautiful and challenging article. As a “non-Aspie”, I can see how “neurotypicals” can so judge and so miss the many shades of communication in a person with Aspergers. You’ve helped me become a better therapist and parent in the writing of this article.
That’s good to hear. I know it can be easy to take posts like this personally or as negative.
Reblogged this on Walkin' on the edge and commented:
“Behavior is communication – dig deeper” may be a more effective catchphrase to embrace. We NT’s make assumptions about autistic behaviors – actually, any behaviors. Assumptions aren’t usually the best way to go…
Reblogged this on Spectrum Perspectives and commented:
“Behavior is communication – dig deeper” may be a more effective catchphrase to embrace. We NT’s make assumptions about autistic behaviors – actually, any behaviors. Assumptions aren’t usually the best way to go…
Reblogged this on that Bloody Cat.
Please can you explain what “Elopement” means in this context? I thought it means running away to get married without parental permission. Perhaps I being dense.
I’m rather late finding this post and haven’t read the comments yet so apologies if it’s already been answered.
Fantastic article. My boyfriend is getting better at understanding my unique behaviour and often notices what’s going on with me before I do! Quite often I’ll stand and wave my arms near something I can’t reach/get to before I can think of the words to ask; it isn’t consciously done and it often feels more natural than speaking, especially when there are several demands on me at the time. I definitely study an object of interest for quite along time before saying anything about it and often don’t get round to saying anything, but would welcome sharing it with the other person if they noticed. I didn’t know that was an autistic thing. Less than a month post diagnosis and I already feel less of a loser. Thank you for helping me understand “my normal”.
In the case of autistic kids elopement means “leaving a safe area” so basically running away from a parent at a store or running out of the house unsupervised.
“Less than a month post diagnosis and I already feel less of a loser.”
Yay! Understanding why we are the way we hare can make such a huge difference.
Hiya!
I woke quite early this morning writing about a similar topic. How amazing is that! 🙂
Great minds think alike!
You explained about the “Eye contact (or lack of eye contact) as if you were talking about me. I do this often in work. Especially if a window is in front of me as it helps me to focus and think about what they’re saying. I also for me, it depends on how we’re sitting eg face to face or kind of side by side. I’ve told my employers about my diagnosis. We’ve had training and they’ve been on training numerous of times. However, each time I’m listening away from their eyes / face, what happens next is hilarious. :)) They stick their face in front of mine as if that’ll make me concentrate more than before. When it first happened, I thought, “What’s going on here?” I figured it out eventually. However, when I study them communicating with each other or in a meeting – they too do what we do, yet they do not recognise, or are they in tune with their own behaviour, nor do they adjust well to change if its to do with themselves.
How I look at this is being Autistic has shown me what my strengths are. I know more about myself, than many people who say they are not on the autistic spectrum yet display similarities to our own behaviour. Because some think themselves to be higher than they ought to be, at times their behaviour looks to me as more severely autistic than what my diagnosis states my difficulties are.
I have low moments like everyone else. However, most of us bounce back and we keep on trying no matter how difficult things get. That to me is a great strength to have as many people would’ve given up and made up some lame excuse to get themselves out of doing what they said they would do or what is right!
I think I went off track just now.
Anyway, thanks for your blog – keep up the good work!
I think that when nonautistic people see other nonautistic people’s body language it’s like looking in a mirror. So even if they’re not making eye contact regularly, they’re still sharing nonverbal cues that both understand. When talking with an autistic person, I suspect they feel like the mirror is “broken” and it makes them uncomfortable so they do strange things like what you described here.
My personal “favorite”(with much sarcasm) are people that insist I smile for pictures. I can’t fake a smile. My smile is involuntary, it’s there or it’s not. I’ll try to smile for a photo and get told to stop making stupid faces. I have to think of something that induces me to smile or it just won’t happen and being told I’m making stupid faces makes me want to retreat rather than cooperate. I feel like photos of me where my expression is neutral is more ‘real’ to who I am, so I much prefer to take selfies rather than have someone else take my picture, because then I can be my real self and not wear a mask.
Selfies like these: http://i.imgur.com/qPJPTBD.png and http://i.imgur.com/rGELIRr.png are far more expressive of me and my personality than me standing still and simply smiling. If only cameras could capture “smiling on the inside” maybe I wouldn’t get told I’m not “smiling enough” on the outside. Where did the concept of smiling for pictures come from, anyway? (I’ve saw photos taken at a funeral where people were smiling by the casket and I just thought “stop smiling, there’s a dead person behind you!”)
Facial expressions are hit and miss for me. I don’t know if my face always matches my tone of voice. I guess peoples’ emotions more by tone of voice and whether they’re smiling or not rather than watching their eyes. I just can’t read eyes, period.
I think I’m the most myself when I’m singing with my choir. I know that I sometimes move around a bit, but I never realized how much until I got my Sony Bloggie and started filming myself on Sundays. Singing with my church choir is literally my drug. I get the endorphins I crave and I go on a trip. I come out of a shell and can magically express a ton of emotion that I can’t quite express in everyday life. Singing is technically a vocal stim with a purpose for me. It makes my whole body feel alive. This is the real me! https://www.youtube.com/watch?v=bJuK9KZ66kw
A little aside note: I didn’t even know I threw my hand up in the air until I watched it back later. color my videos to be different, plus I feel like every song has a color and I like my videos to match what’s in my head. And finally, yes, my choir director knows I have autism. I let him know pretty much right away because sometimes I have to wear earplugs or cover my ears if I’m in close proximity to brass instruments or flutes on the rare occasions we have them. He’s nice about trying to position them or me so I’m not right in the path of the sound. 🙂
Regarding eye contact: For me, it can be like looking in the sun. Sometimes, I feel like looking at somebody will let them suddenly know everything about me while I can’t know everything about them. It’s like going naked; it’s a vulnerable feeling. Brief eye contact is tolerable, being told “LOOK AT ME!” is scary. But I’m pretty good at faking eye contact by looking from one eye to the other and at the person’s eyebrows. Mostly, though, when I’m looking at people, I look at their mouth. I’ve always been like that. Even people when it’s people on TV, even cartoons and anime where the mouth is just moving open and shut. I find I process what is said better if I pay attention to the “moving part” or don’t look at the person at all. (But I am horrible with remembering verbal information and prefer it written down!) I might be more inclined to look at someone’s eyes if they’re a really pretty color.
Someone told me my eyes STARE a lot. Kind of like how babies “stare into your soul” (whatever that means!). It makes me really self conscious about making eye contact for more than a few seconds. Either it’s not enough or too much! Argh!
But I’ve reached an age where if I feel like stimming and I know it won’t be noisy or harm someone sitting near me, I’m gonna friggin’ stim. If a blind person can use their white cane and someone with hearing difficulties can turn up their hearing aid to make life easier, then I have the right to stim to make my life easier.
ARGH, I screwed up the editing in that. Sorry. There’s a random sentence that was supposed to be deleted and it didn’t happen.
Ah … photos … sigh … wedding photos … ugh. So, turning the clock back a couple decades, there I was. I even ‘splained to the photog … “no, seriously, you really don’t want me to try to smile … it is what it is.” But he and the new wife insisted. Not wanting a scene on that fateful day I went along to get along. Ouch, total disaster. Interesting aside to this is your comment about where did this meme about smiling for photos get started? I suspect it started mid last century. If you look a photos from prior to then, there’s a lot less smiling in them. Of course part of it was due to the harsher life conditions for most folks. But there’s more, I suspect. Namely, there was no TEE VEE! TEE VEE brought us the notion of the pasted on smiling clones (and drones). A so it began.
“Did you know that an autistic person may express interest in something by studying it for a long time rather than directly engaging at first?”
This reminds me, when I was a new adult living by myself for the first time, it took me about a year to order meat from a counter. I used to stand a few metres from the counter, far enough that they wouldn’t ask me if I wanted to order something, but close enough that I could watch, and just stand there and mouth the words I would need and watch other people and listen to the “Can I help you?” “Yes I would like 200g of ground meat” “Here you are anything else?” exchange and then I’d go and leave the store without any meat. Finally about a year later I managed to go up to the counter myself and do it and since then I’ve been mostly successful at buying it when I want it but I needed that year of quiet study before I could do it. I don’t think there is anything that could have helped me get there on my own sooner.
I can relate to that. There are times when I don’t feel up to doing something without watching and taking it in, and then pondering some more on it. That personal interaction can be really daunting. And it’s good to know I’m not the only one 🙂
This makes perfect sense. I do a lot of observing others and then scripting transactional exchanges based on those observations. Not usually for as long as you did, but at least until I feel comfortable.
And good for you – taking the time you needed and building your confidence/readiness. Going at our own pace is one of the best ways to lessen/avoid anxiety.
I didn’t do it everyday. I’m not sure how often I did it. It might have been when I wanted meat. That might be why it took me so long.
But it didn’t really hurt me to leave empty-handed all those times. I ate other things. And when I did finally manage to get some it was pretty good.
I don’t get it very much now but that’s for other reasons. I got some yesterday and I had to order two different types of meat (but luckily they only sold the stew meats at the first counter and bacon was only sold at the second counter), because I wanted a little bit of bacon to add flavour to the meat and potatoes stew.
It’s never really easy but it’s not as hard as it was that first year when I couldn’t do it at all and I’m good and prepared for anything they might say.
So true!
As someone who speaks autistic with moderate fluency, I am often shocked by how little some people seem to understand about autistic attention and engagement.
Those brief sideways glances at my activity? He’s absolutely fascinated. The finger extended tentatively? He’s ready to try it himself. Sitting beside her while we draw different pictures? We are totally bonding. I don’t know why other people can’t see it.
RE: “If I’m staring off to the side while you’re talking to me, that’s a sign I’m intensely concentrating on what you’re saying. ”
O… M… G…! This is the bane of my existence. Even after I explain this to my wife … it’s still … “are you listening? LOOK ME IN THE EYE!”
“If I’m staring off to the side while you’re talking to me, that’s a sign I’m intensely concentrating on what you’re saying. And if I’m making intentional intermittent eye contact? I’m more focused on “passing” to avoid looking odd than I am on listening to what you’re saying.”
This is exactly true for me. If I’m making eye contact I’m not taking in a word you’re saying. If I am really listening I am looking off to the side so I can focus on what you’re saying. And (since I’ve picked up some social rules) I’m occasionally making eye contact during pauses and nodding my head so that you feel that I’m with you. I will now also make some facial expressions and say little things (like “oh, wow” or “he didn’t!”) to mirror your feelings. Hey if it makes you feel good . . .