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People Are Complicated

October 22, 2016 Leave a comment

Human beings are capable of logical, rational thought. But we are not inherently logical rational beings. We are emotional. We are complicated. We are self-contradictory. We are inconsistent.

It’s easy to forget this. We expect other people to Make Sense, by which we mean that we want to be able to understand the reasons behind people’s feelings and actions. And to some extent, we often can. We have the ability to emphasize, to imagine how we would feel in a particular situation and hence understand how another person in that situation feels. But we can’t always know someone’s situation perfectly. We can’t always imagine that situation accurately. And, of course, we don’t all have identical responses to the same things. We don’t always make sense to each other. We don’t always make sense to ourselves.

So I am amazed at how often I fall into the mental trap of expecting children to make sense. Children are, in fact, less likely to make sense than adults. They are also less able to reflect on, understand, and express the reasons for their emotions and actions. But many adults get annoyed when children act in a way that the adult can’t understand. 

It always amazes me how many adults seem to have completely forgotten what it was like to be a child, to have irrational fears and inexpressible longings and heartbreak over ordinary occurrences. Even though, as adults, we still have these experiences, only perhaps less often and more privately. Why does it never occur to us that a child might be crying because of the song playing on the radio, laughing at something they just imagined or remembered, or angry just because it’s been a long day rather than because of any specific event?

As with so many things, this expectation of an immediate and obvious cause for someone’s feelings is magnified in dealing with disabled children. I was at the beach with a 9-year-old nonverbal client today. We were walking along at the water’s edge when he suddenly began to cry.

I asked him what was wrong, although I knew he had no way to tell me. I asked if he was injured, hungry, cold, if he needed to go back to his Dad, if I could do anything to help… (While he doesn’t indicate yes or no, he will stop crying if I manage to figure out what he needs, so I try to list a number of possible solutions for him.)

When he simply continued to sob, it suddenly occurred to me to wonder why I was assuming a concrete and proximate reason. Maybe he was thinking about something that saddened or scared or worried him. His grandmother has been ill. He has a new baby brother. And there are a million things I don’t know that could be wrong. Maybe his parents had a fight. Maybe he has a mean teacher. Maybe his best friend isn’t in his class this year. Anything could be upsetting him.

And maybe it was something more immediate, but abstract. He spent a long time tossing a ball to himself today, and then we walked past a group of kids playing a ball game. Maybe he felt left out and wished that the other kids would play with him. Maybe he felt sad about being so different from the other kids. About not even knowing how to ask to join them. Perhaps he was just disappointed that he was walking with me instead of swimming with his Dad (they did go swimming, but not for as long as he wanted).

We found a bench and sat. His Dad came over and started running through the same questions I had– did he need a snack, a sweater…? He waved Dad away, turned his back. He told him not to cry, and, at my urging, went back to his swimming. 

“Don’t cry.” I hear that a lot, from many sources. It’s usually said in a sympathetic way, not a mean way. “It’s ok, buddy, dry those tears.” “Don’t worry, there’s nothing to be scared of.” “Aw… Cheer up, honey.” It’s a natural response, I think. We hate seeing someone in pain (there’s that empathy again). We want to fix it. We want to make it all better. And sometimes, we can. Sometimes sympathy and reassurance is enough. Love alone has dried many a child’s tears. But it can also hurt to be told that everything is ok when that just isn’t the case. So I’ve removed the phrase “don’t cry” from my vocabulary.

I put my arm around my client’s shoulder and sat with him and his tears. I spoke softly. 

I reminded him that he was loved.

I told him that everyone feels sad and cries sometimes. And that he would feel better eventually.

I told him I understand that life can be really hard, and that it was ok to feel upset about that.

I told him that I wished I knew how to help him feel better, but that sometimes it just takes time.

He reached over and gripped my hand. After a few more minutes, he stopped crying. He stood up and tugged me in the direction of the parking lot.

“Ok,” I said, “Let’s go get your Dad and tell him you’re ready to go home.” And we did. And also, I told him that he was a great kid and I love hanging out with him. I probably should have said it sooner. I’ll try to remember to say it more often.

We Are Not Amused: Problems with the First Person Plural 

September 19, 2016 Leave a comment

Today I’m writing more about language. ​I’ve been thinking about adults who say “we” when talking to or about clients or children with disabilities, as well as children in general. 

I want to acknowledge that different people have very different levels of education, English language fluency, and ability to monitor their own speech. I sometimes get frustrated with activists who seem convinced that you can’t fight for social justice without using exactly the right language– language that is unfamiliar to most people.

I am a very language-oriented person, and it is difficult for me to write simply (for example, the first sentence of this post was originally “Continuing with my prior theme of dissecting language…”). I’m trying to become more accessible, since my natural writing style is hard for many people to read and understand.

Back to the topic.

There is a tendency for adults working with the disabled to use unnecessary plurals: that is, to say “we” when talking about something the other person is doing. I’ve seen some understandably hostile reactions to this in the advocacy community. But I also realized that I do it sometimes. So I started trying to figure out when and why. 

People usually say “we” to small children, disabled or not. Sometimes it really is a plural, and sometimes not. I think it’s hard to see the difference with babies, because the adults do almost everything for them or with them. “We’re going you upstairs to change your diaper” definitely involves both parties. And sometimes the adult is really just talking to themselves. “Are we having a cranky day?” isn’t a question most babies will answer.  

Other times, it’s like the parent is talking for the baby. “We need a nap” really means “The baby needs a nap” (although I bet Mom would like one, too!). I think this way of speaking makes people angry when a non-disabled person is speaking for a disabled person. Autistic rights activists get particularly upset about phrases like “We’re having a bad day,” when the speaker really means that a child (or even worse, a disabled adult) is having a bad day. Of course, it’s often true that if a person is having a rough day, their caregiver is struggling as well. 

I’ve used “We’re having a bad day” when talking about my disabled clients, especially if they are present, and I thought about why. One reason is because saying “He/She is having a bad day” sounds a little bit to me like I am blaming that person, when the truth is that I’ve probably made some mistakes that contributed to their bad day. It also sounds like I am totally uninvolved, and that feels impolite too. “We” feels more inclusive. Talking about someone in front of them is different than talking about you and that person. It’s usually rude to say “S/He’s going to the beach” in front of that person, but it’s perfectly fine to tell someone “We are going to the beach.” Really, though, it would be best to say something like “Today has been hard on everyone,” or “I think she’s had a lot of frustration today,” or “He seems upset.” I can’t know exactly what they are thinking or feeling; I can only guess.

Sometimes”we” really means “we.” “We are going to pick up your toys,” can mean “You and I will pick up the toys together,” and that’s just fine. 

What really bugs me is when someone, usually a professional, says “We’re going to pick up our toys now,” or “We need to put away our shoes,” or “We need to finish our lunch,” or “We need to earn three more tokens,” when they really mean “you” in all those cases.  We don’t talk that way with typically developing children, even when we are talking about doing something together. We say “I’ll help you pick up your toys,” or “You need to eat your lunch,” or maybe “Let’s put away your shoes.”

Using “we” and “our” when you mean “you” and “your” is infantilizing. I remember, as a fourth grader, our entire class being horribly offended when a substitute teacher (who usually taught kindergarten) said “Let’s all follow Mrs. Spitzer to the cafeteria now!” She was guilty of referring to herself in the third person (of course, I have changed the name) as well as addressing us in the first person plural. 

Now, sometimes people do use “we” in instructions. If you watch cooking shows, you’ll hear things like “Now we’re going to put our cake in the oven” or “We need to cut all these vegetables up really small, because we want them to cook quickly.” And usually the speaker is giving a demonstration at the same time. This can work in a classroom or therapy session, as in “We can use a graph to show this trend” or “We can mix red and blue paint to make purple.” At least, it works as long as the teacher isn’t using that awful sing-songy baby voice…

The other way that it’s sometimes OK to use “we” is to make a general statement. When adults tell children, “We cover our mouths when we sneeze” or, “We need to share with our friends,” they mean “I do this and so should you” or “This is what people are supposed to do.” Making a general statement can take the sting out of being corrected. I have a client with Down Syndrome who reacts badly when confronted directly but is happy to modify her behavior when I phrase it as a general rule, such as “Young ladies say excuse me when they burp” or “Remember, we always say thank you for gifts.” But this method, too, needs to be done respectfully. 

As usual, my underlying message is about the need for respect. A good general rule is: If you wouldn’t say it to a non-disabled person, don’t say it to a disabled person. But that’s easier said than done. It’s hard, too, to speak in an age-appropriate way with someone who doesn’t understand the things a typically developing person their age understands. Remember that what goes around comes around: you can’t teach someone to be respectful unless you are respectful to them.

Literal Language, Again 

September 16, 2016 Leave a comment

Anecdote from today. I was out walking with a teenage client and her BI. We’re working on teaching her to cross the street safely– stop, look, then walk. She’s not particularly interested in learning this. She’s used to having someone else take care of it for her, and she’s generally unenthusiastic about any task that requires her visual attention.

We reach an intersection, and stop. The BI prompts her to look to one side and then the other.

“Any cars?” She asks the client.

“Yes,” the client answers, although the street is completely devoid of traffic.

Now, this may well have been sheer laziness on our client’s part. “Yes” is often her default answer, and she tends to be a bit lax about yes/no questions. I have a hunch that the reason for this careless approach is that it only ever takes two tries to get a yes/no question correct, so why bother thinking about it too much? You say”yes” and then you get told “good job” or “try again.” Big deal. 

(I also suspect this client of deliberately answering wrong at times during easy tasks in order to spend more time on those tasks rather than harder ones– a metaphorical “dragging her feet” tactic. So far, I seem to be the only person who has noticed this. On the other hand, she’s tricked me a number of times into helping her with a task that I later find out she’s perfectly capable of doing on her own.)
Returning from my tangent here: there is another possible explanation for her wrong answer today, and it goes back to what I said last time about precise language. Language has a lot of subtext and context, and we process them so automatically that we don’t even consider the possibility that our assumptions may not be obvious to someone else. The BI asked the client if she saw any cars. And there were plenty of cars– parked alongside the road. Is it possible that our client simply didn’t think about the purpose of the question and so misinterpreted the connotation?

“Are there any cars coming towards us?” I clarified. The BI laughed as she realized the possible misunderstanding. Unfortunately, our client’s attention had already moved on to other things, so I didn’t get a chance to find out if my rephrasing of the question was useful. 

This is one of many reasons that I really wish ABA practitioners would give their clients brief explanations of tasks and their purposes before starting each task. It doesn’t do much good to teach someone to look both ways and report on the presence or absence of cars if they don’t understand that the purpose of this activity is to decide whether or not it’s safe to cross the street. 

I might as well take a moment to point out that there are valid arguments on both sides here. Reasons to explain a task briefly beforehand include: 

  • The client might be able to judge how important this particular activity is for them (eg., they might be more attentive if they understand that the purpose is to keep them safe); 
  • The client might be less frustrated with a seemingly meaningless task if they can see that it is a step towards a larger goal;
  • Offering an explanation is a form of courtesy and respect, of treating the client as an intelligent human being and presuming competence. If they can’t understand the explanation, there’s really no harm done, while if they can understand it, it seems rather rude not to offer one.

Reasons against include:

  • Letting the client decide how important they consider a task can backfire, as children’s priorities are not always the most sensible;
  • There is the possibility that the way the explanation is phrased will create misunderstandings that interfere with learning the task;
  • On a related note, having the end goal in mind from the beginning might lead to the client skipping important steps in their haste to reach the result;
  • Caregivers and therapists have to be more vigilant about laying blame on a client who fails at a task despite having had it explained. It’s very hard to remember that understanding the rules/steps and following them are separate skills. Also that being able to repeat the reason for something doesn’t necessarily mean understanding that reason. (I am reminded here of an anecdote in the memoir “Following Ezra” that goes something like this: the boy steals something from a classmate. To discourage this, his father tells him that when he steals, he disappoints both his father and God. The boy memorizes this lesson… and comes home the next day to cheerfully report, “Hey Dad, guess what? Today I disappointed you and God!” He had learned the words of the lesson but not the meaning, or at least not the implication, obvious to most people, that disappointing dad and God is not a good thing. He wasn’t a malicious kid, just an oblivious one. Fortunately, his father understood this and tried explaining it a different way.)

So, this post got a lot longer than I intended, and now I can’t think of a clever way to wrap it up. I hope I’ve given you something to laugh about and something to think about.

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.

Thought-petals: What Autism Means To Me

May 22, 2016 3 comments

Autism means…

…Running down the hill, full tilt, holding hands, feet flying, gasping for breath, laughing for the sheer joy of it.

Autism means entire conversations held without words.

Autism means…

The constant and constantly changing puzzle-game of trying to understand one another, and the incredible moments of joy and excitement — the Aha! — when one person’s means of expression is grasped by the other person’s brain. It’s a brain-teaser with a truly valuable solution, a code we’re racing to break together.

(I love this about tutoring, too.)

Autism means shouting “yogurt!” from the rooftops. Because you have the right to express yourself even if no one else understands.

Autism means colors colors Colors COLORS!

And happy flapping hands.

Autism means needing a break from stimuli other people don’t even realize are there.

It means the blissfully peaceful look on your face when you come up from a dive, completely renewed by the immersion and the pressure and the magical world of water that holds you safe from sound and smell and the rest of the world.

Autism means that sometimes you need to bite down on your own hand just to get through a certain moment. And that’s ok, too.

Autism means talking in sound effects.

And deciding that we’re not going to use silverware at dinner tonight.

And lying down on the floor a lot.

And sitting the wrong way in chairs.

And hiding under the covers.

And tight bear hugs.

Autism means that something you see or hear or feel or smell or taste or think can be so fascinating that you just plain forget about everything else in the world.

Sometimes it’s like an involuntary mindfulness exercise.

Sometimes it’s frustrating and overwhelming.

Sometimes it’s tranquil.

It’s often beautiful.

Autism means paying very close attention, it really does. Just… maybe not paying attention to what you expected.

Autism means…

…emotions like fireworks — sudden, blindingly intense, incredibly memorable, the center of the world one moment and gone the next, leaving your ears ringing and your eyes blinking away spots…

…and sometimes it means not being able to show what you mean…

…and sometimes being able to express things more sincerely and profoundly than most people can…

…it can mean being a poet, a painter, a scientist, a person who thinks in numbers or pictures or videos or music, a person who reads at lightning speed, who remembers everything, who tastes music or hears colors, who notices the smallest details…

…Autism means being the square peg. Sometimes very obviously so. Sometimes with edges just slightly, almost imperceptibly, too wide for the slot into which everyone expects you to fit.

Autism is where you lose yourself and find yourself at the same time.

Autism means that look on your face when you watch the water sparkle…

Autism means the sounds you make when…

Autism means…

Autism means…

…fragile fascinating fascinated flying falling free focused fireworks…

Autism means you, and you are beautiful.

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