The Perils of Passing

“Third Rock from the Sun” television show:
One of the human characters, Mary, was explaining to Dick (one of the aliens trying to impersonate humans), her reservations regarding dating him.

Mary: “It’s as if you were out of sync with every other person on this planet!”
Dick: “What do you mean? Every day I go out of my way to do things that appear normal!”

There’s a lot of attention placed upon trying to make people with various differences appear to be “normal”, everything from in-the-ear hearing aids (that often are not as useful as behind-the-ear aids), to prostheses, to training autistics to mimic NT social behaviour. Not all of these are bad things necessarily. Given the current popularity of going around wearing a Bluetooth mobile phone on one’s ear like some kind of of cyborg, I can see hearing aids turning into equally high-tech decorative bits.

Unfortunately, emulation works against the overall health of the autistic, for a number of reasons.

Emulation is not a viable goal because it creates additional stress.

Spending extra energy to appear normal is stressful. Spending time trying to make eye contact and worrying if it is being done enough, and suppressing little mannerisms or tics adds to the work load of existing. Spending mental energy attending to these things means having less to devote to other activities, such as decoding speech or organizing and monitoring the visual environment.

Even if depression has a partly genetic basis, extra environmental stress worsens that.

Emulation is not a viable goal because even if the social rituals like eye-contact are performed, that does not mean the autistic will gain the same information from the activity.

Whether or not emotional perception on the part of the autistic is due to less eye contact and facial observation or vice versa, may be a chicken and egg question that will doubtless take more neurophysiological study to unravel. However, the result is the same, because even if the autistic attends to facial observation, that does not necessarily mean the same information will be perceived.

Emulation is not a viable goal because an impaired ability to do so results in ostracism from the community.

If it isn’t done well all the time, people feel fooled. Trying to normalize me or make me “indistinguishable from my peers” isn’t going to work. I don’t do it well. My little weirdnesses aren’t that noticeable at first, but they pile up like snowflakes obscuring the scenery. Then people get annoyed at me because they feel betrayed and fooled, thinking I was a one-of-them normal person.

Emulation is not a viable goal because it devalues the inherent qualities of the person.

Lack of acceptance for who or what one truly is leads to additional stress, depression, increases and/or aggravates the types of stress-related health problems. Lack of acceptance for who or what one truly is leads to increased self-esteem problems and increases the difficulties in social interaction.

My recommendation:

Quit trying to forcibly mold autistic children (and adults) to emulate neurotypical behaviors. Focus instead upon working with the person rather than against them. Work with their skills and aptitudes, work upon stress-reduction techniques, and work on methods for interacting with others that are natural for both the autistic and neurotypical people. Work beyond denial or tolerance toward acceptance and appreciation of diversity in schools, work places, medical care settings, and other arenas of social interaction.

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C’est Normal: The Enabling Environment

It was quite a while before we realized that aspie-kid was more than a trifle unusual. Part of that was not denial, but rather the mental yardsticks employed at home. An aspie kid with parents who have diverse disabilities doesn’t really stand out. (The neurotypical kid once joked about feeling left out for not having any kind of exceptionality. “You were speech-delayed,” I offered, but our dear loquacious English major pretended to not be mollified.)

For example, Aspie kid has some minor sensory issues, and has always been particular about not wanting to wear anything but soft, loose clothing. So what? Who doesn’t have clothing preferences? Aspie kid doesn’t like spicy foods, and even in high school will eat “naked noodles” (pasta without sauce) more often than not, and is quite content with plain white sticky rice. Hardly a crisis; as far as I can tell, teenagers’ natural forage is pizza, and as a subspecies, doesn’t really require an extremely broad diet beyond what’s required for nutritional balance. Only one style of nubbly hairbrush is acceptable to the kid (natural bristles are intolerable), so there’s no telling if the long hair thing is another sensory issue about not wanting to get haircuts. But hair elastics are cheaper and much less hassle than regular trips to the salon anyway, so no complaints here.

The extended family did note the disinclination to join into the chit-chat in favor of hanging quietly on the edge of the gathering. But what this child lacked in mobs of kids visiting our back yard to play has certainly been made up for in a steadfast friendship with a particular pal, which friendship has lasted more than a decade.

In later years the teenager’s bedroom floor became the stereotypical mess of clean & dirty clothes and books and snack wrappers et cetera (once again, heavy on the et cetera), but we have to find a certain charm with the periodically-resurfacing habit of lining up objects along shelves – there may be snack dishes piling up, but the computer accessories are tidy!

The other part of not immediately seeing the offspring’s exceptionalities is that they didn’t particularly stand out because we have an enabling home environment. I don’t mean “enabling” in the pathological sense, but rather that home life is designed to reduce problems on a variety of levels.

Dad is hard of hearing, so the children grow up reading television captions. This certainly seems to have aided reading and vocabulary skills, and reduces comprehension problems for those of us with Auditory Processing Disorder. Well, at least when we’re watching television. Mixing up people with hearing impairment and APD at the dinner table can lead to some incredibly recursive conversations as we verify and correct what’s being communicated. Text messaging (as a replacement for phoning each other with voice messages) was just made for families like ours.

For the teachers, yet another child who repeatedly has trouble remembering to finish or turn in assignments, and who loses winter coats et cetera (heavy on the et cetera) isn’t rather notable. (If the jigglyness doesn’t include interrupting the class, the teachers won’t have time to worry about it.) Thankfully this was the second child, so the ADHD mom had time to figure out some coping strategies of her own for keeping track of objects and tasks, and started working on them with the kid. Of course, dad despairs of the two of us ever sitting through an entire movie or television show without popping up for something-or-another. But gee, isn’t that why the Pause button exists?

In the natural environment of the home, our respective disabilities are relatively minor. Sometimes dad doesn’t hear people calling for him, once in a while the grilled cheese sandwiches get overbrowned because Mom gets distracted, and periodically the lawn gets shaggy because the kid is busily perseverating upon some obscure detail of computer gaming. When all else fails, you send the kid to track down dad and let him know that mom’s has finished making a fresh batch of sandwiches and it’s time to eat. The grass will of course, still be there tomorrow morning.

Tying the Knots

A series of vignettes strung on a chain, now broken.

My mother just wanted a “normal” girl; maybe it was that entrenched social conformism. By 5th grade she kept stressing this idea, so I observed what girls were interested in, which was horses and romances. Therefore I ordered one each of horse and romance stories from the Weekly Reader book club, and found them to be profoundly disinteresting. I could not fathom either the attraction or the point! When I was a high school freshman, Mom decided that I lacked femininity and grace, so enrolled me in a “charm school” held at Sears & Roebucks, where we were taught the proper way to apply makeup, walk with a book on our heads, kneel to pick up an object from the floor while wearing miniskirts, sit down in a dainty and discreet manner, curtsy and such. Somehow this failed to make me more normal.

Shopping for my clothes invariably provoked more complaints; I was “so picky” about clothes, meaning there are many fabrics I cannot stand to touch or wear, not to mention the collar tags (which I now remove). I remember getting overwhelmed at the department store as a child, one of those seriously old-fashioned places with an elevator operator, glass display cases of merchandise, multiple floors of merchandise, and pneumatic tubes slinging upstairs to the cashier’s cage. One department, or maybe the dressing rooms, had high-contrast vertical striped wallpaper that gave me slithery-jangling-willies. Sometimes the floor seems to ripple; busy surfaces like speckled/tweedy commercial-grade carpeting or color-streaked linoleum or striped wallpaper acquire a quivering aspect, like wavelets upon great bodies of water. I know from repeated experiments (done as a child) that these surfaces do not really ripple or undulate, so I generally ignore the effect, but sometimes it takes me by surprise. I get vertigo and things seem to spin around, or close distances yawn far away from me. Mom hated dragging me with her, because I’d want to hide in the center of the circular coat rack, muffling out the noises and smells and colors in the darkness and comfortingly-heavy pressure of yards of dense fabrics. I was just trying to cope with the sensory overload, but all she could see was that I was being disobedient and an embarrassment to her from by attracting attention to my weird behavior …

Unfortunately, in the long run my mother seemed more concerned with assigning blame than resolving problems, and she decided that my long-standing academic difficulties were due to rebelliousness; I was just “acting out.” One day in high school, after I handed over the dreaded report card, she grounded me with the fierce proclamation that “All children rebel, but you are doing it ALL WRONG!” For her, there was one way things were supposed to be, and I did not fit her expectations: granted I didn’t drink or do drugs, but I also didn’t date, didn’t drive, and didn’t excel in school, sports or social activities.

There I was trying to rationally understand how people thought and interacted, and instead I had someone who was (alcoholic and) inconsistent, inexplicable, and unpredictable. I kept trying to wrap my head around making sense of what she said and did, and kept getting my mind tangled up in Laingian knots. What I needed was access to strategies that would allow me to learn how to meet my own needs. Instead, what I got was a denial that those needs existed. She could not, or would not understand that my needs were different than hers. Her denial, disbelief, or dismissal caused me to doubt my own self-understanding, and thus prevented me from helping myself. Years later I finally understand her actions as being narcissistic, for all she asserted that she was only trying to prove to others how hard she worked to “help” me. It wasn’t just about her “not understanding” that I was different, it was about my not being able to give her what she needed. It was all about what she needed. Repeatedly, the scenarios played out, as she:

  • Told me how I “really” felt emotionally or physically, or told me that I could not possibly be feeling something, that indeed I actually was feeling.
  • Discouraged questions, saying that they were either stupid, or that I didn’t need to know such things, or that everyone knew about ((whatever), and that I was foolish for bothering her to ask about things.
  • Asserted that I must be either crazy, lying or on drugs when I described experiencing colors while listening to music.
  • Said I was being “too picky” because I could not stand to wear some kinds of fabrics, or got sore spots on my neck from collar tags, or could not stand to have my bedroom curtains open on sunny days, or could not stand the noise when some kinds of woodshop machinery were being used.
  • Delivered me curious “compliments” that did not feel like such, “You know, if you just wore a little makeup, you might be kinda pretty.”
  • Denigrated my interests as being stupid because they were not “normal”; I should be buying cute hair ties or makeup instead of a Latin dictionary or an antique volume on structural design & engineering by the National Park Service.
  • Told me, “Don’t listen to what I say, listen to what I mean!” (This to someone who misses out on so much unspoken dialog?)
  • Took to red-inking my personal diary and creative writing efforts for grammatical errors, ridiculed my social concerns as being absurd, and the story plot ideas as being stupid.
  • Periodically would go through my locker, purse, notebook or bedroom contents in an effort to find something incriminating (drugs I did not use, or notes from non-existent boyfriends), and then accused me of being devious because she could not find anything.
  • Would not admit when she was wrong; I was obviously confused, or lying, or making things up.
  • Accused me of stealing clothes when my Spanish teacher gave me one of her used blouses, then changed her story and said I had been lying to the teacher and misrepresenting myself as poor and neglected.
  • Considered my expressing frustration as being “rebellious.”
  • Disbelieved my scholastic problems when I tried to explain them to her, but then turned around and saying that I had been “hiding” problems when teachers or my school counselor told her about bad grades from unfinished tests, missing assignments, jumbled math homework, bad spelling and such.
  • Asserted that my problems from bullies were all because I had “brought it upon myself” and was causing the bullying, and simply being “whiny” and “just trying to get attention” when I told the problems to various teachers and the school principal.
  • Ridiculed my concerns about scholastic problems, and demanded good grade results but would not accept the fact that I needed help to achieve those goals, saying that my lack of results was due to merely being lazy and not trying hard enough.
  • Convinced others that that my problems were burdens that I created intentionally for her out of rebelliousness.
  • Denied my problems or belittled them as being much less important than any of her own problems.
  • Complained about the cost/ shopping effort/ need for basic school items (such as a required style of gym socks or graph paper for geometry class) as though these were unusual demands I had invented just to make her life more difficult.
  • Assigned guilt by association – badmouthing my father (her ex-husband) saying I was just like him.
  • Curtailed contact with others (my teachers or counselor, interest clubs) and discouraged me from doing things on my own, then said I couldn’t do things because I had no experience or skills.
  • Gave me responsibility and consequences of things getting done, without giving me the means to do them effectively.

As ever, she was more concerned with finding faults and assigning blame than with resolving problems, because it was all about “saving face” on her part. It was my fault; she was trying so heroically to help me, but I was just being stupid or stubborn or rebellious. “Damnit Andrea, you know what your problem is? You don’t have any self-confidence! That’s just so pathetic!”

Although I now understand the essential errors in this denial, disbelief, and dismissal, these kinds of statements are still things I run into once in a while, from other people. It is a shame, really. Once I began to make sense of the world, I kept trying to change the family dynamics, to improve things, to help her understand, but she actively resisted change, even on those rare occasions when she would acknowledge that things were not right. But, you cannot make people what you want them to be.

You can’t change the past, but you can change how you react to it.

And if thy hand offend thee

And if thy hand offend thee, cut it off.
~Mark (ch. IX, v. 43)

The current research into the genetic basis for autism includes not just understanding it as an intrinsic and permeating neurological difference, but is straying into the realm of being able to screen for babies carrying those genes, just as one can screen for (and thus not bear) babies with Down’s Syndrome.  (It should be noted that Down’s syndrome is a nonheritable genetic difference, but many other conditions are heritable.)

There’s an element of hatred in destroying an aspect of one’s self. The hatred is not always visible as stemming from fear, because the inherent paradox can be repressed. This paradox of virtue by self-hatred comes from a double-bind disguised as social responsibility: “Don’t you want to have a healthy baby?” How could this seemingly innocent question be a double-bind, an unwinnable situation? If you answer Yes, then you are at fault for not doing/having done the deed. If you don’t want to do the deed, then you are a worthless [future] parent because you aren’t Doing The Right Thing.

If an embryo carries a genetic trait, then that means you were responsible by having the genes in the first place. If those genes are undesirable, then that can be described as the genetic equivalent to passing on the sins of the fathers to the sons. Screening embryos for hundreds of “bad” genes is essentially seeking to perfect and breed better humans. People are uncomfortable with the fact that we can’t “fix” everything with science or social engineering, and remove all traces of perceived imperfection.

The genetic screening scenario presumes upon knowing which traits are bad and which are good, and ignores the fact that genetic diversity is necessary within a population for it to be able to adapt to new situations. We need people with different skills to fulfill different roles, some of which may not yet exist. Furthermore, the “usefulness” of particular genes is not always evident; having two sickle-cell genes makes one anemic, but having one sickle-cell gene confers resistance to malaria. Useful traits can occur because of clusters of interacting genes, and identifying all the players in the interaction is difficult; you may need some genes (that could be individually problematic) but work in synchrony with other genes to create useful traits.

Screening out embryos assumes that autism is a bad trait, rather than a variation caused by combinations of genes. It also assumes that having autistic children is tragic because there is a social stigma to having a defective/ crippled/ retarded/ autistic child — the child will never grow up to have a job and marry, but will ever be a burden upon the parents and society in general. Those “afflicted” are therefore undesirable and not-quite-human; people who are different are unacceptable. The whole “quality of life” issue given as the rationale for such efforts is presented in tragic, worst-case scenario terms. It paints disability as a fate worse than death that must be avoided at all costs.

Such disabled or nonstandard individuals must be able to “prove” their [monetary] worthiness to society to be acceptable, and thus deserving of the same rights and privileges as others. To be acceptable, the deviant people must do their best to “pass for normal”. One must straighten kinky hair, pretend you don’t have a gay partner, walk with braces rather than use a wheelchair, wear “invisible” hearing aids, and for heaven’s sake, not flap your hands in public when you get excited about something. Those perceived norms or desirable qualities state a lot about the implicit social power structures: only the imaginary “normal” people are okay, even though in reality there is no perfectly average, normal person.

Much of the disability seen in autism is from the extrinsic, socially-created problems. In essence, people are saying that genetic screening is a good thing because those children would have poor-quality lives, but are ignoring that such attitudes are a large part of what create difficult lives for people who are disabled or different!

The tragedy is not in having a baby that is in some way different, but rather in the thinly veiled disdain / loathing / fear of the public that is projected onto the baby, and therefore reflects upon the mother’s moral, genetic and social worthiness. It’s her fault if she declines to avail herself of current genetics testing (for any number of anomalies) and bears a “defective” baby.

Should women be required to produce an acceptably standard “product”, a baby that will conform to prevailing social norms of desirability and perfection? It seemed like a good idea during the American and German eugenics movements in the early decades of the 20th century …

Stimulating Topics of Conversation

Today was a long, exhausting day working at summer camp. It was, as some people are wont to say, “a stimmy day”. So that’s the topic of today’s blogging.

One of the complaints I read about on some parenting boards is “the stimming problem”, when a child engages in self-stimulatory behaviours. (No, I don’t mean masturbating, although that could be a stim; we’re referring to finger-fiddly activities, whole body activities like jumping, rocking, spinning, and so on.)

Many people act as though autism is cause of stimming. This isn’t quite true; stereotypical stimming behaviours are associated with autism. Rather, stress is the main cause. Stimming is nothing more than a more focused version of someone else’s “nervous habit”. Various stimming behaviors can be beneficial stress-coping mechanisms, assuming they’re not self-injurious.

We should note that stimming activities are things that EVERYONE does. People smoke, or fiddle with their hair, or stroke mustaches and beards, or spin wedding bands around their fingers, or chew gum, or bite pencils, or repeatedly click ballpoint pens, or fiddle with pocket change, or mangle paperclips, or count rosary beads, or slide necklaces, or play with earrings, or crack knuckles, or doodle on page margins, or stare out the window, or pace, or endlessly swizzle mixed drinks with decorative stirrers … you know, all those stereotypies that neurotypical people engage in.

The only difference is the type of activity. Those previous things are “normal” whereas autistic stimming things are “not-normal”. But how can something be “abnormal” when millions of autistic people do it? Then again, I bet a lot of those so-called “normal” behaviours are done by ADHD people leaking hyperactivity around the edges in a socially-acceptable manner.

I’m prone to “swaying” or rocking from side to side. I’ve been doing it for over forty years. My husband has finally resigned himself to the fact that if I stand and talk for more than a few minutes, I’m likely to start up. (It was camouflaged when I had tots in my arms, but now they’re in high school and college.) I even rock some while teaching and doing presentations (gasp!) and the world hasn’t come to a screeching halt yet. Fifteen-plus years of this and they still send me contracts and invitations. It’s not an issue of “she rocks but she’s a really good speaker” but rather that “she’s a really good speaker and sometimes she rocks”. Come to think of it, not even that. No one has ever mentioned it to me. Maybe no one notices. Or maybe no one cares.

My office chair is a rocking chair. Rocking chairs exist because people like to rock. Even the better sorts of conference room chairs rock. Rocking is soothing. Rock on!

Listening to the same music track repeatedly is a great stim. For the highly distractible ADHD brain, it nicely spackles in some of the attentional inputs, and helps drown out some of the random auditory background, thus enabling better concentration. There must be LOTS of people who like to do this, as many music players have a Repeat function so you can listen to the same track over and over and over and …

Some people try to reduce their child’s stimming through behavioral modification. Unfortunately, this often prevents the person from using their stress-coping mechanism, and thereby increases the sum stress load, which is unhealthy. Likewise suppressing behaviors such as stimming is not going remove the ultimate causality – masking the outward behavioral appearance does not change internal processing. Verily, it can create more difficulties for person by short-circuiting natural learning & stress-management techniques, thus reducing ability to successfully interact with world and others in it.

(And we all know that suppressing the stimming behaviours is not going to eliminate the autism, no matter how “normal” the person acts on the outside. Duh.)

Of course behavioral modification can be used to change problem behaviors; it is something that good parents and teachers do all the time. But smart parents and teachers know that the best way to prevent problem behavior in the long run is to address the cause of the problem. Wise and caring parents and teachers do not blame the child for having problems and stimming, but help the child learn ways of dealing with the daily stresses, and if really necessary, find ways of stimming that are more socially acceptable.

Because you know that stimmy autistic children grow up to be – stimmy autistic adults. And fidgety ADHD children grow up to be fidgety ADHD adults. Next time you’re in a meeting, quietly scatter a bunch of paper clips on the table and watch what everyone does with them!

Trials and Tribulations

People whine about how hard it is to have an autistic child, or any kind of exceptional child. All too often there are terrible news reports about parents who have killed their handicapped or autistic children because they were such a horrid burden. Even more horrifying is when the press perspective or quotes are full of sympathy for the murderer because killing your own child is “understandable” because a person can’t help but be insanely stressed from dealing with the child’s abnormality. Excuse me; that should be the alleged murderers; trials haven’t happened yet for several of these cases.

Holy shit! Parenting is hard. Period. Yeah, there are bad days. Some days you feel like you’ll never get to eat your food at the proper temperature, or go potty or take a shower uninterrupted, or sleep through the night. Some days you feel like you’ll never finish the endless assessments, or learning more about the alphabet soup of ADHD, APD, ASD, TS, DSM, IEP, or attending special school meetings. Some days you feel like you’ll never get through the little chats with the police officer on your doorstep, or the hormonal teenager angst, or the getting homework done and turned in so the grades reflect a little of the smarts behind the scholastic ennui.

Amazingly, this is true regardless of what sorts of kids you end up with.

It’s true that there are some problems with autistic children that one doesn’t have as often with neurotypical children. There are also problems with NT children that one doesn’t often have with ASD children (when was the last time you read a blog by a parent sighing over how their autistic kid wanted to invite two dozen kids for a birthday party at Chuckie Cheez followed by a sleepover?) Different is not worse.

Aspie kid was a “runner” as a toddler. With my faceblindness I have great difficulty finding people in crowds; tracking down a small child that has bolted into the mobs of people at a mall would have been dangerously slow. Thankfully my other kid was four years older and could help me. I ended up having the tot in one of those child-harness & leash setups when we went shopping. People would give me dirty looks because I was a “horrid mommy who put their kid on a leash”. Frankly, I was a concerned mommy who wanted to keep her kid safe, because this child was fast, strong and inclined to dash off when intrigued by something.

There were also meltdowns, which being unaware of autism at the time, were to me simply “being too tired” and/or “having a tantrum”. So I ended up figuring out what the triggers usually were, and finding ways of circumventing those. We also learned how to calm down, and how to recognise when things were starting to get to be Too Much. I also learned the fine art of calmly saying, “Having a temper tantrum is not going to make me change my mind. When you calm down, then we will shop some more.” (I used a lot of If-Then and When-Then constructs when dealing with my toddlers; they could understand the binary constructs, and it helped them make sense of cause and effect.) Of course, passers-by would want to intervene and try to comfort/appease the child or chastise me for having a crying, floor-kicking kid on the grocery aisle floor. I also acquired the other fine art of smiling, nodding, and reassuring them, “It’ll be okay in a minute or two.”

This child also had/has distinct clothing and food preferences. Some relatives called this “picky”. I thought of it as merely having … preferences. I like my clothes or my food a certain way; why wouldn’t anyone else?

Sure everything was all about orcas when younger. Sure made gift-giving easy. Now it’s videogames (shocking, I know). Sure makes gift-giving easy. (Unlike dad, who has neither perseverations nor any particular hobbies; is that just so weird, or what?!)

Different is not worse. It’s just different. Rearing children is going to do major things to your daily life structure, your bank account, your living room furniture, your social life, and so on. That’s real life. Whining because your life isn’t going the way you thought it was going to, or like some kind of posed ideal family scenario from a greeting card, is simply whining.

Meanwhile, learn how to have fun with your children. Figure out how they learn, as unique individuals. Experience how they share their thoughts and feelings, as unique individuals. Take photographs, collect stories about funny family moments, and build up that group identity of “this is the sort of stuff that makes our family because we’re all part of it”.

DON’T EVER wait until “things get back to normal” or “when this is all over” to do anything. There is no “normal”. This is it. This is life. Fun is something you make, not something that happens to you. Families is who you are, not something you wish would be. Love each other, live it, enjoy it.

(And bake cookies, because cold milk and warm cookies with your fingerprints pressed into the tops are great family-glue.)

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