Things that need saying

November 21, 2011 Leave a comment

This blog is where I write primarily about disability rights, both from my job and from my own experiences as a person with chronic illness.

I  have a BS in psychology, with a concentration in cognitive and neuro psych. Since graduation, I have worked as a psychology research assistant, tutor, and as a caregiver for children with assorted developmental disabilities. This last is my true passion, and this blog is written largely on behalf of the wonderful children and young adults who are my clients.

A note: as they say, “the names have been changed, but the stories are real.” I have altered many details in my posts to conceal the identity of my clients as much as possible. And dialogue is generally not exact, as my memory is, well, memory. However, I have not made any of these stories up. These are all things that happened, both the good and the bad, the heartbreaking and the incredible. Such is life, particularly where children are invovled.

On the Subject of Weight Loss 

This is a little outside the realm of my usual topics, but it’s come up enough times now in conversations that I want to write about it.

There is a lot of heated debate right now about obesity: how it affects health, whether it is the result of moral failings, who should have the right to comment on it or define it, what to do about it, and on and on.

Disclaimer first:

I am not a healthcare professional or a professional biologist. At this time, I am relying on my memory for much of this information rather than doing due diligence and looking up the relevant studies, although I certainly encourage others to do so. All numbers given in this essay are for the purpose of illustration only: they are not based on any actual data. Also, please excuse my tendency to anthropomorphise biological processes: your internal components obviously don’t actually “think” or “want” things, but it’s a convenient way to describe what occurs.

All that being said, let’s see if I can address one of the most common misconceptions about calorie intake and body weight: the idea that there is a direct, linear relationship between these two things. There is not. I commonly run across the argument that anyone can lose weight by reducing the amount of calories they ingest. Some people claim that exercise is also necessary, but the general point always comes down to the idea that fat is caused and maintained by eating more calories than one uses, and can be reduced by reversing this behavior. But biological systems are a lot more complicated than that.

First, it is a mistake to consider calories fungible (or equal or interchangeable). Our bodies may process the same number of calories very differently depending on the form of those calories, which is why we have terms like “empty calories” (calories that don’t have much nutritional value) and “good” or “bad” carbs and fats (based on how we digest them and what their health effects tend to be).

More importantly, though, there’s also an incorrect understanding of what it means to need a certain number of calories per day. I often hear people say things along the lines of “Well, just figure out how many calories you use per day and don’t eat more than that.”

Problem #1:
What do we count as “using” calories? We don’t just burn calories when we engage in deliberate physical activities. Energy consumption is involved in everything we do– breathing, moving, thinking, growing. We use calories to repair injuries, replace damaged cells, increase muscle mass, go for a walk, digest our food, maintain our fat reserves, and to perform all mental activity, from deliberate problem-solving to emotional regulation to sensory processing. And it’s not easy to determine how many calories are needed for optimal performance of all these tasks.

Problem #2:
Your body doesn’t necessarily prioritize calorie allocation in the order that you’d like. In fact, one of the first things that gets cut back in a calorie shortage is brain-power. Your brain is a massive energy-hog, and evolutionarily speaking, we don’t need to spend much time on math and science and history and office politics and romantic relationships and social activism and keeping our temper when our boss is being a twit. We can pretty much get away with: Find food, find mate, don’t get eaten.

So when you have fewer calories to work with, the cutbacks start in the brain. You may have noticed this personally. When we’re hungry, we’re often grouchy and easily frustrated and have a harder time focusing and thinking clearly. But don’t take your own experience’s word for it. There’s a lot of research evidence on this– comparing test scores of students who have and haven’t skipped breakfast, impulse control in hungry versus sated people, and so on.

Problem #3:
Your body has its own internal settings– what temperature it wants to be, how much sleep it needs, and so on. And your body is willing to put a lot of resources towards keeping things the way they are. These settings include an approximate set point for weight, which is why there are people who remain skinny regardless of consumption and people who remain fat even with healthy diets and high activity levels. And why medications, illness, age, and other factors can drastically alter a person’s weight even if the person’s diet and habits remain fairly constant. Lasting weight change requires changing your body’s set point, and some bodies make this change more easily than others.

Generally speaking, it is hard to get your body to change the set point to a lower one… and relatively easy to get your body convinced that it should have more fat reserves. Excess consumption obviously has this effect– the body says “hey, let’s store some of this extra for later!.” However, cutting back dramatically on calories can also increase weight, because your body thinks “huh– I’m getting fewer calories than usual. We may be preparing for a drought, lean harvest, or other time of scarcity, and we don’t know how long it will last. We’d better save up as much as possible now.” Your body then boosts your hunger signals and again starts cutting calories from other areas of functioning. This is one reason why drastic calorie restriction diets do far more harm than good.

As I understand it, body weight maintenance is highly prioritized by our physiology– pretty much right after critical systems like circulation and digestion. And I suspect one of the reasons exercise is so important to weight-loss is not just how many calories it burns, but that muscle-building is one of the few causes your body ranks highly enough to actually prioritize over maintaining fat reserves.

Let’s look at a couple fictional scenarios illustrating the ramifications of all this. Imagine you consume an average of 2000 calories per day (the numbers and proportions here are completely fictional). Let’s say you spend 300 of those calories (about 1/7) on basic internal maintenance tasks, including maintaining your current body weight. Maybe 1000 calories go to mental activity, and the remaining 700 to physical activity.

You want to lose some weight, so you cut down to 1500 calories daily. There are several possibilities for how your body can react.

1) Your body keeps the ratios the same: 1/7 to keeping your body as it is, about half your calories for the brain, slightly less for voluntary movement. This isn’t too bad– you’ll lose weight slowly and have to put up with being a bit more tired than usual for a while.

2) Your body keeps putting those 300 calories per day towards homeostasis (including body weight), leaving you with only 1200 calories to be split between physical and mental activity rather than 1700.

3) Your body decides you may be facing a calorie shortage and increases the percentage of calories it turns into body weight, at an even higher cost to other functions.

4) Ideally, your body would trim fat without making any significant cutbacks in other areas, resulting in weight loss with no negative side effects. This is certainly possible, but it is far from being the only, or even the most likely, result of cutting calories.

In short, reducing intake alone is a pretty poor gamble to take if you’re trying to lose weight. The real trick is to get your body to change its ideas about how to allot your calories, and that’s a lot more complicated. Excercise can help, but isn’t necessarily sufficient. A more complete answer involves eating more nutritious food, increasing both physical and mental activity levels, and a bunch of other subtle epigentic factors that we’re far from understanding. We know that stress and general happiness have a huge impact, and so do sleep schedules. And there’s compelling evidence that eating a diet closer to the traditional diet for wherever your people came from can be a huge help regardless of calorie count. And so on and so forth.

It’s even harder to study all this than it sounds, since people who make significant body weight changes often have many of these factors involved, and the factors themselves can interact. When people get into exciting new relationships or more high-pressure jobs or experience other major life events, their stress levels change, their priorities change, their personal habits change, their mental health changes, other medical factors change… and it’s nearly impossible to untangle the order and magnitude of all these changes. Similar factors are involved in quitting smoking and other such things that require a fair bit of wrestling against the instinctual reactions of one’s own mind/body. So chances are good that the person who just “up and decided to lose weight one day” had life circumstances that played into making that decision, being able to stick to all the lifestyle changes necessary, and having their own biology respond in the way they wanted. 

This certainly isn’t to discourage anyone who wants to lose weight from trying; rather, people who want to lose weight and have failed with only diet and exercise may simply need to take a more holistic approach that prioritizes improving general wellbeing rather than merely reducing waist size. But it’s also important to acknowledge that we are very complicated systems, both physically and mentally, and some of the factors that affect our systems are generally beyond our awareness, much less our control. 

Categories: Disability Rights

Beach Days

It’s something of a cliche that autistic kids adore water, but you know what they say: a cliche is a cliche because it’s true.

Over the past few weeks, I’ve gotten to join several families on beach outings, and it’s always a wonderful experience. It’s fun to compare the experience of two clients in particular — two nonverbal autistic 9-year-old boys with very different personalities. 

The Flapmaster General is a “hummingbird” child — always in motion, full of energy, exuberance, curiosity, and, often, frustration with the rest of us who obviously can’t keep up with the world as he experiences it. He is desperate to communicate with the people around him, too. He uses a handful of spoken words now, clumsily and inconsistently, and is rather more capable with a speech device, although still only with very straightforward requests.
Flapmaster can spend hours happily playing keep-away with the waves, darting and dashing, giggling and shrieking, following each receeding wave down as close as possible before scampering back to dry sand just barely ahead of the incoming surf. It’s one of the few situations in which he can truly run as much and as quickly as he likes. 

I run with him, giving him his space but staying near enough to grab him if he tries to go into the water, or seems likely to crash into other people, or takes it into his head to go jump on someone else’s sand castle or steal their toys. (This particular day, he actually approaches another child and asks for “my turn” with the kid’s bucket and shovel. I am pretty impressed by this. However, since I can’t always just ask strangers to give him things, I take him to go fetch his own toys instead, and he seems happy with this solution.)

It’s a blazing hot day, and the Flapmaster scorches his feet on the hot sand when I take him to the bathroom. I should have thought to go find his shoes first. He firmly declines to step back onto the beach after this, so I, feeling guilty for my part in getting his feet hurt, offer to carry him instead, to much laughter and eye-rolling from the rest of his family, who think I spoil him. Which I do, whenever I get the chance, because he is an awesome kid who deserves to be treated like royalty on occasion.

On the boardwalk, he flaps excitedly at the seagulls for a long time, jumping and fluttering as though he too might take to the air at any moment. And then, to my great surprise, he selects a nice park bench and sits, just sits with me, holding my hand, for the longest time I’ve ever seen him be still. He is so relaxed, so happy.

Lest you think it’s all idyllic, I will mention that there was a fair bit of stress and drama on the long ride home, but what do you expect on a day trip with 4 kids in one car? In the end, tears were dried, spills were mopped, and various stops were made to solve various other problems, and all was well if rather behind schedule.

The trip to the beach with the boy I call Soundtrack was a very difficult experience. Just me and him and his mother on a grey and somewhat chilly day at a local beach. Soundtrack is even less verbal than Flapmaster, but a good deal more vocal, with loud exclamations amidst his verbal stimming, in addition to whistling, humming, and occasionally imitating bird calls. He isn’t as fond of direct interaction with people, either, but he’s affectionate in his own way.

​While his mother rests, Soundtrack and I play in the surf. Loud cries of joy burst forth amidst his usual humming as the waves crash. I encourage him to yell as much as he wants here where the wind and water scream with him. (He gets shushed a lot at home, understandably given that there’s a baby in the household). He has a strong voice, and people occasionally look over at him in surprise when he hollers. One girl about his age looks at him nervously. “Don’t worry,” I call over to her cheerfully, “he’s just excited!” Her frown clears and she goes back to playing.

To the dismay of many parents, a recent change to my company’s respite care rules states that I cannot be responsible for a client in water more than a few inches deep (ie, the shallowest possible wading). The liability concern makes sense, of course, and the ocean here is a very different one from the sheltered bays I swam in as a child. Most of these kids, in my experience, have a healthy respect for that danger, and aren’t actually likely to go in deep enough to get into trouble… but that’s somewhat beside the point. 
Soundtrack loves to jump in the wet sand. He often prefers me to stand behind him holding both his hands, as he plays. What he actually wants, really, is for me to wrap my arms around under his and lift him, “jumping” him over the waves as you would do with a small child. He is not, however, a small child — he’s quite a solid and large child and I could barely do this with him when I  met him a year-and-a-half ago. I make various attempts to explain this, but that doesn’t stop him from jumping up and expecting me to take his weight on the way back down. I do my best not to drop him too hard or pull any muscles… but I also try to do what he wants to the best of my ability, because he’s smiling, and that’s something I don’t get to see very often. 

As for being restricted to wading, clever kids know how to find loopholes in any rule, and Soundtrack is no exception. And he plans on getting the full ocean experience even if he isn’t allowed in any deeper than his ankles. First, he drops to his knees in the shallow surf so that he can see the waves at eye level. Then he lies on his belly in the “seal” position and does “the worm,” rippling his body up and down so that the incoming waves can wash under and over his body. Lastly, he turns about so that his feet face the ocean, and lies there kicking, “swimming,” as it were, in water 3 inches deep. I can’t help but laugh… but I’m impressed as well.

Later, his mother joins us in the water in order to take him a little bit deeper. With the water at our knees, she and I hold him between us, and finally he can pull his feet up and float on the waves. Next time she says she might try teaching him to boogie board, because I pointed out to her that he spent quite a while watching another kid on a board– and Soundtrack doesn’t look at people very often, much less watch them as though they interest him!

These experiences make me smile. I may come home exhausted, sore, sunburnt, or having been kicked and pinched multiple times… but when you come right down to it, I got paid to go to the beach, get some nice healthy exercise, and watch kids I care about enjoying themselves. Sometimes, this job just plain rocks.

Categories: Disability Rights

A Word on “Warrior Moms”

July 22, 2016 12 comments

Warrior Mom: it’s a title many parents claim proudly, and a term most autistic people react to with horror and fury. Why?

Well, let’s start with the dislike. Many in the autistic community associate this term with a particular (and largely American) parent community that refuses any concept of autism acceptance. In this model, mothers are waging war against autism itself, avidly seeking cures and preventions, viewing their children’s condition as tragic and wholly undesirable. Autistic people, understandably, view this as a war against them, their very existence. It hurts to think that their own parents wish that they had been born different… even if it is only to spare them the struggles they face. They hate the implication that parenting autistic children is inherently a struggle, because that makes autism itself seem like a horrible thing. There has been a lot written about this elsewhere, so I won’t belabor the point.

But there’s another interpretation of the term “warrior mom” as well, and I think it’s a valid one. The distinction is crucial: both see themselves as fighting for their children, but while one type is fighting to “fix” what is “wrong” with their children, the other is fighting for their children’s right to exist as they are and have the best possible autistic life.

And it is a fight, make no mistake. It’s hard enough to give any child a good life, but parents of disabled children must go far above and beyond. I see many of my clients’ families waging this war constantly — and yes, usually it’s the mothers who are on the front line. This is a war against the judgment of strangers and family members alike, against school systems that drag their feet on providing reasonable accommodations, against professionals skeptical of these kids’ talents and potential, against bullies of all ages.

These moms are warriors because they make millions of phone calls trying to get through to someone who can actually make a positive difference in their kids’ lives. They are the ones calling for IEP meeting after IEP meeting, just trying to get their child into a classroom that doesn’t make them miserable. I see mothers who don’t speak English as their primary language struggling through legal papers trying to make sure they don’t miss a single accommodation their child has the right to have. They take time off work for classroom visits to make sure their kid is being taught at an appropriate academic level. 

These moms are tenacious. They spend years clawing their way up waiting lists for the best PTs and OTs and accessible summer camps and the teachers that other families love. They drive for hours to visit the one provider who is actually helping their kid’s digestive problems, then spending another two hours on hold trying to convince their insurance company to cover the visit. They fight their homeowners association or landlord’s rules so that their kid can have a trampoline or kiddie pool or companion animal or whatever they need. 

These moms endure a lot. People yell at them for not “controlling” their child, kick them out of places for being disruptive, and deluge them with well-meant but infuriating advice. They often have to fight against their own personality or their own cultural norms in order to advocate for their children. The work is, of course, worth it — but that doesn’t make it any less exhausting, intimidating, or overwhelming.

So this is why, unlike many in the autistic rights community, I don’t automatically get angry when I hear terms like “warrior mom” or “super-mom.”  Because plenty of mothers truly deserve those titles, for reasons that don’t reflect negatively on autism at all. So let’s put the blame where it belongs: on the society and systems that make life harder on all of us, autistic people and parents alike. And let’s work to change it. Because no mother should have to become a superwoman just to get their children’s needs met.

Categories: Disability Rights

Brief note on the events of the past week 

​I don’t often get around to posting about current events, but this time I will. 

Those were human beings, every one. 

Every Black victim, every cop, every protester, and even the shooter. Those were people. Every single one was somebody’s baby once upon a time. Every one of them laughed and played as a child. Every one of them has loved someone — a parent, a friend, a mentor, a lover, or a child of their own — at some point in their lives. No matter what else those people did and thought and believed during their lives, they were humans, one and all. 

Every death was a tragedy.

Categories: Disability Rights

I Know It Was Meant Well….

July 3, 2016 4 comments

I’d like to start off by saying I’m sorry for calling out a total stranger in this post.

I know there are parents out there who will wonder why I’m picking on a mother whose intentions were obviously good. And there are autistic people who will think I should be much harsher in my judgement, who will want to remind me that good intentions are not enough to excuse hurtful words.

But this isn’t about a person. It’s about an action. You could even call it a behavior. This mother did something hurtful without being aware of it, and I had to bring it up, to caution others against the same mistake.

It’s a chilly day, but my client’s grandfather takes us to the beach anyway. She loves swimming, but also enjoys just playing in the sand. This is one of my “severely autistic” clients– 9 years old and completely nonverbal– no speech, no sign, very occasional use of a handful of words via iPad. She’s clever, though. But then, I think all my kids are brilliant🙂

We put out a picnic blanket, and we play. We make a big pile of sand and take it down again. She rocks and flaps and squeals with delight. Because she’s generally very sensitive to touch, it’s never occurred to me to offer her any physical contact besides the basics– holding her hand, helping her dress, that kind of thing. But her grandpa comes over to tickle her, and to my amazement, she loves it. So I tickle her too, and the three of us laugh.

It’s a late autumn day in San Diego, and there are plenty of people in the water despite the cold: surfers and boogie boarders in wetsuits, a handful of children playing in the shallows. A boy about the same age as my client has finished swimming and sits a few yards from us with his mother, wrapped in a towel.

His mother comes over, and I’m a little surprised when she speaks to me.

“Hi! I’ve been watching you playing with your daughter, and I just wanted to tell you that you’re doing a wonderful job,” she says, “My son is like her, and I know that it can be so hard. But you’re doing great.”

I know. She meant it as a compliment, and as a moment of parental solidarity. She was thinking that I probably get a lot of weird looks or glares or criticism from other parents, and she wanted to offer me something different. And I appreciate that.

But there’s one problem, and you may have missed it.

She said that it was “so hard,” obviously referring to raising an autistic child. That’s unfortunate, but understandable. Raising any child is hard, and raising one with disabilities is often harder. Or maybe she didn’t even think it was that hard, but assumed I did.

That wasn’t the problem.

The problem was that she said it right in front of the child she was referring to.

In front of a child who cannot speak in her own defense, cannot ask for reassurance that she’s loved, cannot ask “what did that woman mean when she said…?” A child who has probably overheard a million times that she is difficult, or a problem, or heartbreaking, or any number of other variations on the same theme.

And that is unacceptable.

I know it wasn’t meant that way, that the mother had no intention of hurting the girl’s feelings. She probably didn’t realize even it could hurt the girl’s feelings, and that speaks to an even bigger problem.

She just assumed that the child in front of us couldn’t understand, or wasn’t paying attention. Maybe the girl was looking into the distance and humming, which typical kids do when they are not paying attention. But most likely, it was just the fact that the girl was obviously autistic. That alone was enough to make this mother fail to notice that she was saying something hurtful in front of the person she was talking about.

This tendency to talk about children in front of them isn’t limited to autistic kids, I know. Plenty of adults talk about neurotypical kids, too, and say unkind things in their hearing. That isn’t right either. But disabled children are so much more vulnerable, so much more likely to overhear that they are a burden, a tragedy, a hopeless case. That parenting them is so hard. And they take it to heart.

I suspect most of us remember how awful it felt to disappoint our parents, or make them sad, or believe that we made life harder for them. Do you also remember how easy it was to get that impression from a single sigh of frustration, a shaken head, a few snappish words? How long did you worry and fret over a single criticism or an argument you overheard your parents having? What if people often said you were so hard to raise?

How often does my client hear that? How much does she understand? I have no idea. But I’m pretty sure it’s more than most people think. And because she has no way to tell me, I must assume she is understanding, paying attention to, and worrying about everything.

I wasn’t about to get into all this while babysitting, especially since that conversation might also hurt my client. So I did what I always do at times like this. I did my best to counteract any possible negative effects. I gave my client a huge hug and a big smile.

“Actually,” I told her, “I’m not her Mom, I’m her aide. And she is the best kid ever! I adore getting to spend time with her. My clients are all wonderful kids and I’m very lucky to have them in my life.” There was a brief pause, as (I suspect) each of us considered our own surprise at the other’s words.

We exchanged another pleasantry or two about how much the kids love the beach, how soothing the water is for them, then said goodbye. But the experience left me feeling shaken. Shaken by how easy it is to overlook something like this, how often our words have impacts we never consider.

So please, pay close attention to your words. Assume your children, your clients, your students are always listening. Assume they understand everything you say. Think about how you, as a child, would feel if someone spoke those words in front of you. Around nonverbal kids in particular, be vigilant. Someone’s self-image may depend on it.

It’s a Dog’s World

Here’s an extended metaphor. Imagine a world where the only possible pet is a dog. Dogs are everywhere, and people know a lot about them, but they’ve never heard of any other kind of pet.

Imagine a family going out and getting a puppy, a cute little furry puppy to love and care for and play with and take on long walks. But they soon begin to have concerns that something is wrong with their pet. He is soft and cuddly and adorable, but…

Well, he can’t seem to learn how to walk on a leash, or sit on command, or fetch. His tail is much too long, so long it drags on the ground at times, and he doesn’t wag. They thought he was wagging once or twice, but then he growled and snapped when they tried to pet him. He’s usually affectionate, but  doesn’t like having his belly rubbed, and can even become violent when his family tries to scratch his tummy. They worry about his abnormally small size and his odd sleep schedule, and about how he stretches in ways that can’t possibly be healthy. He only picks at his food, won’t chew bones, and spends a huge amount of time licking his own fur instead. He frequently manages to get onto counters and shelves that a dog shouldn’t be able to get up to, and they are terrified he will fall and get injured. He doesn’t play well with other dogs,and is easily frightened by all sorts of unexpected things. Sadly, he’s never barked, not even once. Instead, he makes odd squeaks and growling noises.

They talk to their friends, who agree that they’ve never seen a dog act like this before. So they take him to the vet.

The vet agrees that there is something wrong. She’s seen dogs like this before, she says, and while there are some things that can help, she is afraid their pet may never be quite normal. She recommends certain foods, and intensive training in obedience school to help the puppy learn how to take better walks and tolerate tummy-rubs. They should spend more time at the park, where he can learn to be less frightened of the bigger dogs. He might never bark, she says, but he’ll probably find other ways to express when he is excited or needs to go out. They should discourage him from making those strange growling sounds, as they will confuse other people and dogs into thinking their puppy is aggressive. She knows it’s hard to have all those other families staring at their weird pet and telling them that they’ve done a lousy job training him. She assures them it isn’t their fault he turned out this way. In terms of appearance, it might help to surgically remove part of his tail, and have him wear a body brace to keep his back from sagging and bending too much.

Now, those of you from planet Earth may have figured it out by now. The problem with this dog is that it isn’t a dog at all– it’s a cat! But these people– the family, their friends, the vet, the trainers– don’t know anything about cats. They only know about dogs.

So what can this family do? Well, they can embark on the program recommended by the vet, and try to make their cat as dog-like as possible. Or they can adapt to life with a cat. They can learn that his “wagging” is actually a sign of unhappiness, that his belly is too sensitive to be petted, and that his strange growling noise– purring!– means that he is content. It’s not going to be easy– they will be the only family on the block who can’t put things on a counter or shelf to keep them out of reach, and they certainly can’t let him off his leash at anyone else’s house. Other people and dogs are often going to be frightened by his purring, assuming he’s growling at them. He doesn’t enjoy many of the activities most dogs do– swimming and frisbee and chew toys– and they worry that he will be lonely and bored much of the time. And what if he gets out of his harness and runs away? Whoever finds him will think he’s a wild animal when he doesn’t respond to “sit” and “stay,” and he might get treated as a stray even though he wears a collar. No matter how dedicated his family is to making their life cat-friendly, there will be some things that will simply never occur to them, like catnip mice and litter boxes.

It isn’t going to be easy trying to change so many things on their cat’s behalf. But the cat is never going to become a dog, either. He may learn to play with dogs, and even enjoy it, and eat their food and walk on a leash and generally fit in well enough for most people to assume he’s just an odd breed. Or he may not. Perhaps only a few people will ever think that it’s ok for him to look and act completely like a cat. But we can dream of a future where people know enough about cats to keep them happy and healthy, even in a dog’s world.

This is What “Pathologizing” Looks Like

June 21, 2016 8 comments

(The following essay is satire. It is intended to have a humorous effect. However, like other satire, it is also intended to make you think seriously about the issue at hand.)

(It is also not intended to shame anyone, neurotypical or neurodivergent, or mock their emotional needs and preferences. The topic was chosen because many people, particularly neurotypical people, engage in this behavior without needing to, and often without even being aware that they are doing so. There are also strong and largely unexamined cultural norms about these behavioral patterns, and I do wish to call those into question by describing this behavior as an outside observer might.)

*****

Paper proposed for inclusion in the Journal of Neurotypical Studies:

“Behavioral Manifestations of Perseveration on Appearance: Appearance Fixation Disorder in American Neurotypicals”

The majority of neurotypicals display obsessive behavior regarding personal appearance. This can range from moderately stubborn preferences for certain colors and hairstyles, which generally do not interfere with normal life activities, up through very expensive and time-consuming shopping, personal grooming, and other related behaviors.

Appearance fixation causes many neurotypicals to spend much of their lives wearing clothing that is at best impractical and often self-injurious or dangerous. Long-term use of cosmetics, hair dyes, and “fashionable” footwear (particularly for females on the neurotypical spectrum) can cause, respectively, skin breakouts, hair loss, and permanent injury to the feet, back, and knees, resulting in life-long pain. Underdressing in cold temperatures may lead to illness, while underdressing in summer with the goal of acquiring a “good tan” significantly increases the risk of skin cancer. Excessive time in hair and nail salons involves inhalation of potentially dangerous airborne chemicals. While no studies have as yet directly linked this exposure to any specific illness, it seems reasonable to have concerns given the dangers of inhaling many industrial chemicals. The author of this paper suggests that studies should be conducted in order to rule out the possibility that this behavior could contribute to neurological damage and autoimmune diseases.

Not all personal-appearance preferences are pathological, of course. Having “favorite colors,” and “wanting to look nice,” for example, are experienced regularly by most people. And while many neurotypicals choose to dress in uncomfortable fabrics, this may be  understandable, given their frequent undersensitivity to texture. The concern, however, occurs when the neurotypical child or teen persists in attempting to wear clothing that restricts movement or blood-flow, or presents health and safety concerns, as do “high-heeled” shoes and temperature-inappropriate outfits.

Antecedents to Appearance-Fixation Disorder:

Appearance fixation disorder is extremely common among neurotypicals, although it tends to have an earlier onset age and be more severe in girls than in boys. This disparity narrows during the teenage years, when social conformity behavior among both genders is generally at its peak. In adulthood, many men, particularly those in the “white collar” workforce (notice how even the terminology refers to appearance!), develop an increasing obsession with social status, which leads to more appearance-related behaviors. Adult women (again, particularly professionals) are often under extreme social pressure to conform to complex and incomprehensible appearance-related norms set by their peers of both sexes.

It can be difficult to predict the areas of appearance-fixation that any one neurotypical will develop: one may show a primary obsession with hairstyle, another with the newness of their attire, and another with achieving a certain “look” (such as “professional,” “hipster,” “preppy,” “goth,” or “laid-back”). However, exposure to mainstream media (television, magazines, and other advertisements) seems to contribute strongly to the fixation, and parents are recommended to limit their children’s viewing of these media as much as possible during formative years. Perhaps in part because of deficits in their ability to make logical decisions, neurotypical children are particularly vulnerable to harmful messages about the role of appearance in “social status” and “fitting in,” which fall under the category of another symptom set: the neurotypical tendency towards hyper-socialization.

Symptoms and Consequences of Appearance Fixation:

Neurotypicals, particularly from the “tween” years onwards, often display signs of extreme emotional distress when seen without their chosen apparel– shame, embarrassment, fear of rejection, and lowered self esteem have been observed in many cases. Female neurotypicals are even known to refer to their chosen pattern of cosmetics as “my face,” suggesting a worryingly deep emotional attachment, even to the extent of identifying oneself solely by physical appearance. Given these factors, we can perhaps begin to understand why neurotypicals will choose “fashion” over comfort, convenience, practicality, and even safety.

Not all neurotypicals display appearance fixations to the same extreme. The financial and time burden of strong appearance preferences is usually something that a family can accomodate with minimal difficulty, although many families seek care because appearance-related behaviors can be very time-consuming and make it difficult to get children and teens ready for school on time in the mornings. Very few neurotypicals are comfortable wearing identical or even similar outfits on a daily basis, unless the outfit is specifically dictated by a current “fashion trend.” In a related concern, children whose appearance fixation includes an obsession with the “social status” of clothing can end up costing parents exorbitant sums on “brand name” merchandise and frequent requests to replace clothes before they are outgrown or worn out, due to the child’s concern that the apparel is “outdated.” It is estimated that adult neurotypicals also spend shockingly large amounts of their income on appearance-related purchases, sometimes purchasing entire outfits solely for use on a single occasion, and frequently going into debt in order to “keep up” a certain appearance. Distressingly, many appearance fixations seem to involve both a desire to replicate as closely as possible the appearance of figures from popular culture and a phobia of wearing the exact same apparel as one of their peers. Imagine the amount of time and energy this must cost them!

Treatment and Recommendations:

Very little has been studied so far in the way of treating appearance fixation disorder. Many elementary and high schools have attempted to address this problem by instituting uniform dress codes, but this seems to serve only to increase the obsession with displaying visible signs of social status. Additionally, as these uniforms are almost always chosen by neurotypical school officials, they are invariably just as uncomfortable, impractical, and temperature-inappropriate as the attire that neurotypical children select on their own. Other places that require appearance-uniformity (the military, jobs that provide a uniform, or even office dress codes) are likewise problematic, often increasing the “social conformity” behaviors that most neurotypicals suffer from.

As noted before, parents may wish to keep their neurotypical children and teens away from mass media and other sources that encourage problematic behavior, such as shopping malls and the make-up aisles at grocery and convenience stores, as these can often trigger an outburst of appearance-obsessive behavior. Impractical clothing and footwear may be reserved as an occasional reward for good behavior, but should not be used on too much of a regular basis. Footwear, in particular, is an area where parents need to be firm, as inappropriate footwear can cause damage to the developing feet (and in the case of “heels,” to the knees and lower back as well, not to mention the increased risk of serious falls, twisted ankles, or other injuries). Neurotypical children may also benefit from regular exposure to social stories and other media that explicitly outline the importance of not judging others by appearance. We remain hopeful that further treatments will be developed that can reduce the heartbreaking impacts of appearance fixation disorder.

*****

If you are a neurotypical, or non-autistic adult, and you find yourself laughing at this piece, please take a moment to step back and imagine, with all seriousness, growing up (and living as an adult) in a world in which this paper was meant to be taken seriously. A world in which your preferences and choices (from those made casually and unconsciously to those made with serious deliberation) were subject to this kind of scrutiny. Where the majority of people discussed the “weirdness” of your tastes and moods, where articles trying to explain those things were published in serious medical journals, where your parents debated openly and publicly about whether or not to let you do many of the things you enjoy, and where entire professions (medical researchers, specialist therapists, and innumerable practitioners of alternative health care) were devoted to changing those aspects of your life and personality.

No, on second thoughts, maybe this essay isn’t so funny after all.

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