We have a history of bias against difference. Those differences, like skin color, gender, sexual orientation, and physical or neurological variations, are defined by the people in power. This paradigm explains why we see white skin as Normal and black as Different, instead of the other way around. The same is true for autism. Non-autistic people defined autism as it differed from them, so they labeled movements as "behaviors" and identified autism as a "disorder." The autism treatment created with this bias, behavioral therapy or ABA, seeks to "normalize behaviors," rather than to address the needs of the autistic person.
What happens when we identify autistic people as "Not Normal"? Autistic children and persons learn that society views their bodies as unacceptable and inferior. They are told to keep their hands still (no flapping), to keep their bodies still (no rocking), to walk in a certain way (no toe-walking), to sit down while learning (no moving around). They are physically restrained, with gentle touches or harsh holds. Physical control is seen as benign or necessary because it is acceptable to violate personal space and bodies in the name of treatment or education. But we use psychological control, emotional coercion and social pressure, even more than physical control. "Normal" is defined for autistic people as the thing they are told to be. "Not Normal" is what they are and what they must hide.
The way autistic persons move is natural. They get emotional energy or emotional release from movement, just as athletes, musicians, and dancers do. When they are asked to repress certain behaviors, they must use energy, emotionally and cognitively, to stop. Their marker of worth becomes how often they "fit in," how well they hide their "not-normal"-ness. Their value in society rises in response to how well they imitate "normal" people. They gain a sense of relief and a sense of belonging when they pass these tests. And, over time, they lose their self-worth, their sense of self, and their sense of value.
The psychological nature of the treatment, persuading autistic persons that they must "normalize" their own behaviors, is particularly dangerous. It requires autistic people to constantly monitor their bodies. They must continuously check how they are holding their hands, their feet, their bodies. They must check how they are walking or running. They must police themselves to make eye contact or appear to make eye contact. They feel that they are under the constant gaze of an ever-watchful authority. They can no longer relax, even in private, because non-conformity is punished by rejection and isolation. They become their own prison guard.
Imagine feeling invisible when it comes to access and opportunity, but feeling constantly under surveillance. Always watched for "Not Normal" moves and always ignored for real equality. The combination causes social isolation and depression. It causes people to feel that their bodies are not worthy, so they experience physical discomfort, a loss of worth, and sexual dysfunction.
We have to ask why we allow our children to be "normalized" with ABA and the psychological cost they will bear for a lifetime. We have to ask what happens when we make seemingly benign observations about autistic persons' feet, as one psychotherapist does in her public blog post. We have to ask why we're talking about behaviors instead of the social benefits to autistic people of being widely portrayed in a positive way in the media and public discourse. We have to ask why we're talking about behaviors instead of the benefits of knowing that a certain neurology will not prevent access to services, housing, jobs, or relationships.
This spotlight on autistic bodies is just one way that "we" remind "them" that "they" are "Not One of Us." It preserves the biases of "Not Normal" and enforces psychological harm on autistic lives.
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Thank you, thank you, thank you! This is excellent. It takes a huge amount of energy to move in ways that are not natural for us and can actually impede learning, which is one of the reasons "experts" try to stop people from moving. They think we can learn more sitting still... and focusing lots of energy on sitting still instead of attending to the learning component.
ReplyDeleteThis subject is something I don't believe a lot of people understand. It can be exhausting to constantly monitor our bodies. Much appreciation for you writing about this topic, Brenda.
ReplyDeleteI have said often that things you write about autistic persons reflect wider issues. The constant need to monitor one's own body, the rejection and isolation from non-conformity with "normal," the feeling of being constantly under surveillance could just as easily describe body image-issues among women. It is objectification in the worst sense and as you point out, extremely damaging to physical well-being, mental health, and often leads to sexual dysfunction. We need to ask why we limit the range of "acceptability" in our society. Society is made of of individuals possessing a multitude of skills and attributes. If you picture in your minds eye a line with one side being no such trait and the other side being has the trait, the middle of the line ranges from has displayed the trait once to often displays the trait. Quite obviously, the line, between the two points covers more ground than the ends. So why do we limit ourselves to only the extremities? Where does the line between "acceptability" and "unacceptability" get drawn? In truth, aren't all behaviors normal for different people? We need to ask why our imaging does not widely portray the spectrum of individuals in "a positive way in the media and public discourse."
ReplyDeleteI could go on and on about the costs of defining "more normal" as better, and more autistic as worse...if I could get words around it at all.
ReplyDeleteI have a question for parents and therapists in general....
Does anyone really believe that behavioral therapy will make a kid less autistic, or are they aware that they're only demanding that their kids enact a high-cost fakery of normality?
Wow. Normal is such an individual thing. It's normal for Jack to walk in circles when he's worried or anxious. To be very cautious before tasting something or before speaking with someone new.
ReplyDeleteI have to ask American society, American culture, why does Jack's normal have to change? Why do you/we honor and revere eye to eye contact and disparage the lack there of? Why is sitting still at a desk better than moving about the room? What's more important: your normal or my normal?
I could go on. This is a very important subject. This post touches on bias and passive/aggressive bullying cloaked in a disguise called helping. Discrimination against the very core being of a person is bad, has ramifications that extend beyond what we imagine. Must stop.
Thank you for this post, I consider myself on the way to becoming an enlightened (not sure what term to use) parent and your posts are very helpful. I have a question- an honest question and just didn't know where to ask- it so sorry in advance if this is not the right place. We have always let our son stim, flap, whatever he wanted to his hearts content but we are guilty when he was toe-walking at a young age to place our hands on his shoulders so he would walk flat-foot. It had nothing to do with appearance, we were told by a fairly trusted PT that if he was allowed to walk on his toes he would eventually need corrective surgery for the damage he would inadvertently cause to his muscles. Is this true? Does anyone know? I feel guilty for making him walk with his feet flat if there was no real harm in toe walking. Sorry again if this isn't the right place to ask- and thank you for all of your many posts I have read and learned from.
ReplyDeleteMaybe this story will answer your question. I have a friend whose son toe-walked for *years.* He never needed surgery. His doctor never suggested physical therapy. Wondering why? He was neurotypical.
DeleteI've toe-walked my whole life, and have never hurt myself or suffered any for it. It doesn't cause muscle damage. What it can do is cause the muscles in the backs of the legs to be shorter than they would be otherwise...I can wind up with sore hips and back if I walk heel-to-toe for too long in unsupportive shoes. Solution: supportive shoes.
DeleteI did have a little cousin wind up needing surgery only for ingrown toe-nails that it was said were caused by toe-walking, but he walks *really high* on his toes, whereas I walk more on the balls of my feet. Seriously, he's like a little ballerina; it's physically amazing to see. I suppose that if a kid were putting that much pressure directly on their toenails all the time, it could cause that.
Lastly, if you're a natural toe-walker, it is very uncomfortable to walk with your feet flat. It is not a benign or harmless thing to insist on. I got physically hurt so much more often when it was insisted that I walk with flat feet than I ever have from toe-walking (which is never).
Brenda, thank you! This matters so much. My daughter actually regressed in speech after just a two months of speech therapy at a university speech center that was largely ABA, and she developed a nervous tick. They had promised to just do play with her and not try to mold preschool behaviors, but then they did what they wanted and it was damaging to my child. We ended the sessions immediately and promised her never again. No one would listen. My girl has difficulty with language, but she wants to communicate. Her movements is just her, and it is frustrating to have that become the focus.
ReplyDeleteYet every time we seek professional assistance to help her expand her communication (even those who don’t employ ABA), they inevitably make the comments about movement (“she walks around the room” -- Yes, it is new to her and she is exploring in her way; or “she makes movements with her fingers” -- Yep! Her Dad actually taught her to do that to get the energy out through her fingers when she is nervous, and it helps her calm herself, so not a problem!). Maybe professionals, researchers, and even parents focus on movement because they think it can be “fixed” and children can be trained to “act normally” and that is something for the “trainers” whether parents or therapists to celebrate. But it is not that simple for the child because it is “acting,” and who wants to “act” all the time at home in the place where we should feel secure and loved enough to be ourselves?
I am schooling my daughter at home for these reasons. We are trying to expand her (and our) “language toolbox” so she can express herself more freely without frustration. But she already communicates in so many ways and we recognize that. I hear parents complain about “never hearing I love you” from their child; but good Lord, our children smile and hug and just look at us and it is there in their eyes; I “hear” I love you every day! I “hear” Momma everyday. Those movements are equally to be recognized as normal communication as body movements are normal life.
Have we really become a society where everything has to be labeled and boxed? What’s happened to diversity? We have to demand that professionals, medical practitioners, and scientists, and the media remove bias from their language. Articles like “early intervention normalizes the brain” are unacceptable. Professionals who focus on movements (unless they cause serious physical injury) and aim for “normalization” should be told to take a hike. And whether it is family, friends, or strangers, we must be firm in stopping the comments about movements. I don’t have to explain my child to anyone; I don’t have to excuse her body movements; and I don’t have to explain myself. We don’t have to fit into society’s box, but we have to make that choice for ourselves and our families and support each other in walking what can feel like a lonely road at times.
Thank you, Brenda, for making it not so lonely.
~ D.
Coming at this from another angle, I would suggest that flapping and toe walking are outward signs of anxiety. If someone is feeling so anxious that they need to flap (or roar as my son does) then it can't be very pleasant for them. Surely the answer is to help the flapper/roarer read the situation they are in so they feel less anxious?
ReplyDeleteSometimes I do tell my son to stop roaring (or whatever) as trying to control his environment like that isn't helping him to read the situation and deal with the anxiety.
I'm still a huge fan of this blog BTW - I read it to remind me to lighten up on my son.
My son flaps when he's happy, too. So I wouldn't assume it's a sign of anxiety.
DeleteLike Dixie says, those movements are not necessarily signs of anxiety. They could be any number of expressive movements, just like your movements are.
DeleteWhether it's a sign of anxiety or not, it is a valid expression and a valid coping mechanism. In fact, making an autistic person or child stop the movement adds to their anxiety.
That's what this whole post is about. It doesn't help. It hurts.
Toe walking can be caused by a short Achilles tendon, and not a sign of emotional distress.
DeleteToe walking can be caused by a short Achilles tendon, and arm flapping can be an expression of excitement or joy.
DeleteI flap a happy flap bouncy maneuver (sometimes I keep it subtle though) when I am in joysville, but there is another flappish thing of anxiety that is more of a handtwist thwack face-hiding number.
DeleteBut yes, even if it is anxiety, basically, "Stop acting anxious" isn't the message of most usefulness--but even if it were a useful message (which it still isn't) it might not be the best timing. For me, it's best to practice thinking about dealing with anxiogenic things when I am feeling great and able to focus instead of in the moment of panic, when, seriously, I'm not taking in a lot of new data.
Ideal: give me a heads-up when you know for a fact you are going to make heinous noise or the furniture is in the wrong place or whatever. (Yes I do realize the whole "wrong place" thing is my perspective and there isn't a right place and a wrong place in objective reality.) But anyway it is awesome when people tell me ahead of time that they have put the furniture in the wrong place and that wrong is the new right. I can do that, with forewarning. ;)
As this post is about movement I probably shouldn't have waded in. My sons stims are oral/verbal.
DeleteTelling someone to suppress their anxiety or punishing them for it is of course counterproductive. Until I pointed it out to them, my son's school were punishing him for his unusual and opaque ways of expressing anxiety.
But for my child, I don't think that saying, 'oh cool you want to have that conversation about penguins again' is helpful for him. Usually that sort of thing means he is perplexed but can't put his finger on it or is ashamed to admit that he doesn't know what to do. So I'm trying to help him articulate his uncertainty and solve the problem or explain what is going on.
Thanks for this, Brenda! Bodily integrity is a fundamental human right, but not when socially disallowed movements are in the room!
ReplyDeleteAs a highly kinetic person who can (sort of) pass for normal in many social situations, I've got to say that the movement rules in our American society are extreme and constantly enforced with shaming looks, discomfort- or control-inflected body language, and actual verbal statements about fidgeting, hyperactivity, having worms (I got that a lot as a kid), and the idea that a kinetic person must be anxious, angry, or distraught in some way.
For we who seem otherwise typical, these rigid anti-movement rules are a constant bother -- but for people who require movement in order to learn, to work with and articulate emotions, or to regulate sensory input, wow. This culture is like a gulag, I swear!
It's so nice to be able to write in the privacy of my own office, where I can move, stim, and vocalize as I please. But I notice that if I forget where I am and do any of these completely normal behaviors among typicals, they get deeply uncomfortable and really itch to control me. Poor things -- they need to loosen up!
I agree with most of your points, but don't want to paint ABA with too large a brush. We had an ABA therapist in our home for one hour a week to focus on our almost 5-yr-old's tendency to attack his 3-yr-old brother (Sam) the moment Sam did not do a play behaviour as expected. Max would leap on Sam, strangle him, pummel him in the face, or violently attack himself. He was inconsolable, as was his brother. In our situation, this was not about stimming or needing to be kinetic or body integrity. This was about a child who likely had a script in his mind about exactly how play should occur and likely didn't understand why anyone would be so cruel as to not follow it. Max's heightened distress (not to mention the violence) needed immediate intervention. I would have sought the same intervention (if it was offered to me) for my NT children. The ABA therapist was incredibly respectful and helped Max and Sam tremendously. My child's dignity was respected, with none of his lovely stims touched. Max may still not like turn-taking, but he tolerates it, and has told me directly how much he now enjoys play with his brother. Anyway, I wanted to share a different perspective.
ReplyDeleteABA is not the only way to address this situation, nor the best way. Selling ABA as the only way to address it means we have accepted the "common-sense truth" that autistic people are violent for no reason or inappropriate reasons, 2) cannot understand what they do and so require ABA, and 3) it is acceptable to sacrifice the psychological well-being of the individual and group involved by perpetuating this belief.
DeleteI am particularly troubled by your portrayal of your very young child as "violent" in a public discourse - which he one day will see, and those who know him will see - and what that does to him personally and to other autistic people.
Alicia, you would have sought out an ABA therapist if your NT child behaved like that? I somehow doubt that to be true. I somehow think that you would have sought help elsewhere, speaking to doctors and psychologists or maybe simply a family therapist if you couldn't find help through asking other parents. Because you see, the rhetoric around autistic behavior is far different from the rhetoric around allistic/NT behavior. An NT kid doesn't want to follow the rules, and we explain in a clear, concise way that they must do that or they won't be permitted to play. But with autistic kids, we don't give them the benefit of the doubt, do we? We don't really think about trying different ways of explaining or calling in help from outside sources unrelated to ABA. Autistic behavior is wrong, even if it directly mirrors the way some NT kids behave.
DeleteI, like Brenda, am very bothered by the fact that you chose to use your full name and (presumably) the real names of your children. I hope and pray that one day, your child doesn't stumble upon his name and realize that this is the way that his mother thought about him at age 5.
Listen, I'm a mom. I've got two autistic kids (age 5 and 6) at home, and I am autistic myself. Last year, when my daughter's school was refusing to teach her anything and was making some terrible presumptions of her intelligence level (based on the issue of whether she could use the toiled or not - yes, this is the truth), I looked into my options. And yes, I chose ABA to help with teaching. Perhaps it was the wrong decision, and maybe it was, but it's what I had available at the time (and was covered by insurance). But would I use it in order to curb a behavior like this? No, I wouldn't. Because for me, that's not the point of why we used ABA, and there is nothing wrong with her behavior. Even if she lashed out because she didn't have the communication skills to articulate "I don't like this because". We would remove her from whatever situation was causing the behavior (which I wouldn't term as "violent", and I find it really worrisome that you do describe your child as "violent", as I've rarely seen a 5 year old who is, actually violent) and then try and figure out what had caused the outburst (which usually wasn't that difficult, when it came down to it). Because the truth of the matter is, they don't happen for no reason. Behavior is communication. Autistic bodies use movement and behavior as one of the major ways we interact with the world. If someone touches me without my consent, my natural instinct is to get their hands away from me. In my earlier days, when I was a child and my reasoning was a lot less mature, I would slap or push away. Now, unless I think I'm actually in danger, I politely ask the person to remove their hand, or gently push it away if necessary.
Finally, I understand that a lot of things fall under the ABA umbrella, and that's fine. I'm sure your ABA therapist was perfectly nice and respectful. But the fact of the matter is that in order to do ABA in the first place, the therapist must accept that there is something wrong with the way that an autistic person behaves and moves. That there is something to be fixed. I have interacted with plenty of ABA therapists that are nice people -- until I explained that I wasn't broken. And that I wasn't suffering. And you know what 99% of them tell me when I say that? "Well, autistic people don't really know their own minds." I find that a really prevailing concept throughout ABA and other related therapies.
There are other ways to address behavior that is harming other people. ABA is not the end-all, the go-to or the "common sense" solution.
Brenda, I have to disagree with you here. Pretending away behavioral issues doesn't help anything. If a child acts violently, you have to call it violence, whether they're autistic or not. Admitting that your child acted in violent ways is not going to harm them. Alicia was in no way disrespectful of her son here, and she didn't call him violent, she said he acted violently (although I'm not sure the difference is even notable, if you act violently, you're violent). He had behaviors that were dangerous to his sibling, he's worked through those and come to a place where he no longer has that problem.
DeleteToddlers hit each other all the time, we teach them not to. Admitting that they do it isn't some awful thing, it's just part of life. Siblings get violent with each other all the time, whether autistic or not, we teach them not to. Admitting that they did it isn't harmful to them. In fact, if they never realize that what they did was harmful, or why, chances are they're going to keep doing it.
While I react as strongly as you do to a parent who is portraying a child as "broken", etc., I don't think Alicia did anything wrong here.
As to ABA, I think she has a point. ABA seems to be done very differently from one situation to another, depending on who's doing the therapy. In some situations it may be a useful tool, and Alicia's example seems to fit that bill. She wasn't saying that ABA is the only way to address the situation, she was just saying maybe we shouldn't rule it out in eveyr situation, and turning it back on her like that seems unfair.
Sometimes, lots of times, I have no idea what I'm writing about. I just wing it. "Bias" and "discrimination" I know a little about. ABA, what is that? Never gave it much thought. Never seemed to need to. Until a couple of hours ago.
ReplyDeleteMy better half tells me that we have been signed up to go to ABA classes for 3 hours one day a week for four weeks. The agency rep says it will help get us some benefits. (Read: Money)
So I googled ABA. Definition: "Applied behavior analysis, previously known as behavior modification." I understand immediately why someone changed the name. Them: "Let's modify your son's behavior." Me: "Let's not."
Agency rep, selling ABA Counseling Class: "You'll learn how to teach Jack to initiate conversation." Side note: Jack will talk your head off if the subject is interesting. Rep, again. "You'll learn how to get Jack to try new foods." Side note: I've heard you can lead a horse to water but you can't make it drink.
I had to get away. I got in my car and listened to Tom Petty sing "I'm learning to fly, but I ain't got wings." as I drove around the block.
Then I remembered. Mama Be Good has "ABA" in her first paragraph today. I'm gonna tell Mama Be Good. And so I am.
Better half: "What could they teach us that takes 12 hours spread out over a month?"
Me: "I don't know. But I'm ready. It's gonna be fun."
First class is this Thursday morning. Wish me luck.
Or maybe we should all wish the behavior modifiers luck.
I can hardly wait.
Another side note: Jack is happy and his self confidence is stronger every day. We, his mom and dad, would never jeopardize that.
You gotta love how they changed the name, I'm glad someone noticed that little tidbit! Like suddenly in the last decade or so it became OK to kill civilians during a war because "collateral damage." George Orwell predicted we would become like this...
DeleteSome movements may be anxiety related and others happy - eg my son rubs his hands when excited or happy and makes other movements when anxious. It is easier now that he has enough ability to identify his feelings that he can tell us this. No problem at all with movements as long as they do not hurt him or another.
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ReplyDeleteThe problem with objectification is that intent does not affect the outcome. For example, an advertisement features a woman's posterior. The intent of the director was to point out that the woman was beautiful and should be celebrated. The effect is that women - in general - are seen as sexual beings only. It is the pattern that matters.
DeleteOur society accepts a pattern of putting the spotlight on autistic bodies and ignoring the consequences of doing so.
While I love this blog post, for what it's worth, when I read Cary's post, my first reaction was to feel validated. I felt, "Wow, I do that, and look how many people like me do,too!" Recognizing patterns among others on the spectrum makes me feel included, gives me people that I can identify with who are "Like me." If this were coming from someone other than Cary, who I do consider an ally, I might have felt more uncomfortable...suspecting an ulterior motive.
DeleteI understand your fear about what people with the wrong motivation could do with the information, though. It isn't easy...the whole system of labeling conditions is based on observing and quantifying similarities and how those similarities within the group differentiate from the majority. The way that system is applied has some really ugly unintended consequences, but the only alternative as exists in our current culture would be to pretend those differences didn't exist, which really isn't effective either.
To me, the key is recognizing that there are differences, but that those differences ARE OK. That we even celebrate those differences...much as we do language differences and cultural differences. That's what diversity is.
I know this is an older horse. I just now read this piece. I knew that ABA was a horrible choice for C- and I can not explain well why I thought it would have been a bad fit. I have a friend whose child did very, very well with ABA and she proclaimed it a godsend, but for my kid- I thought it would make the gulf bigger. I thought it would take him so far in the opposite direction from me, and make him feel so antagonized that it would do the opposite of help. When C would melt down- which used to happen with alarming regularity, it would take a long time to get him regulated and accessible to us again. I thought ABA would light him up so hotly that he'd have a very hard time coming back for a seriously long time. I guess that was my issue- glad to see that you can put it into more comprehensible words, Brenda- as typically is the case.....
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