Furthur nuances of ABA-based therapies

I’ve been seeing a lot of discussion online lately about ABA-based therapies.*

Can these therapies ever be done right? How can you tell when a therapy is damaging even though it is play-based, uses no aversives, and doesn’t seem unpleasant for the child undergoing it? Are stressful therapies ok in small doses?

Most people, including most of the ABA therapists I’ve met, agree that one of the most important things for any person to learn is how to say “No,” verbally or not. I’d like to describe two different ways I’ve seen an ABA technician work on this with an autistic client. On paper, the two ABA programs sound about the same (Note: (the people who perform the “therapy” sessions with the kids are trained by private companies and not licensed as healthcare providers or educators in any other way. Program supervisors generally require some form of degree in psychology). Similar stated goals and methods. But observing the techs in action reveals important differences.

Case 1:

The client is 11, minimally verbal (uses single words spontaneously and short sentences with prompting). Therapy consists of 2-hour sessions twice a week after school.

The tech treats the lesson plan casually. She and I and the client lounge on the floor of the living room, or go about the house working on various skills, most of them skills that are often taught by an OT or PT (dressing, using the toilet, preparing to go for a walk, eating a meal). At one point, the tech leans over and tickles the client lightly. The client pulls away a little, and the tech immediately prompts, in a friendly tone of voice as though giving advice to a friend, “You know, you can say ‘I don’t like that,” or ‘please stop,” or…”
“Stop, please,” says the client. The tech immediately stops, and smiles at the client,
“Thank you for tellin me,” she answers.
This kind of exchange happens maybe once or twice a week.

Case 2:

The client is 7, mostly nonverbal, and has 2 hour sessions several times per week. The client is required to sit at a desk for most of the session.

The client is engaging in a favorite activity at the table, mixing colors of play-doh together. The tech reaches over into the activity space, deliberately interrupting. The client pushes her hand away, and she ignores this, putting her hand back in the way so the client can’t continue playing. “No,” the child says quietly, sounding annoyed, not looking up, still intent on the activity.
“No, stop,” the tech prompts (I ask later and find out that she is trying to get the kid to distinguish between “no,” for not wanting to do something, and “stop,” for getting someone else to stop doing something. Seems pretty unreasonable for a kid who uses only a handful of spoken words!).
“Nuh, stah,” mimics the client (the pronunciation is poor but the cadence is imitated perfectly, which makes me grin). The tech withdraws her hand, nods as if in satisfaction, and makes marks on her tally sheet, obviously grading the child’s performance. This process is repeated multiple times per session.

Case 1 isn’t perfect, but I think it’s a good shot at managing a necessary evil in a relatively decent way (the necessary evil being that, in order to make sure a kid knows how to object to things reliably, you pretty much have to provide or at least allow something they dislike for them to object to). The tech didn’t push, didn’t insist on a specific response, didn’t judge… just offered an alternative. The client was treated as a human being.

Case 2 makes me feel sick to my stomach. There’s no camraderie, no politeness, no explanation, and not even a pretense of respect for the client’s wishes. Just training, and frustration. This is more “pure” ABA– no distractions, no additional variables, no unplanned interaction between client and therapist. But what upset me most was that the tech seemed to care only about reaching the objective, having the client perform to a pre-set standard, and not about whether or not the client was experiencing and understanding the power and value of being able to make a request and have it respected. There seemed to be no acknowledgement of the fact that the goal of the work (and the only possible acceptable reason or excuse for these therapies at all) is to provide the client with a skill that is, at least to some degree, /useful to them/. Communication that will be understood by others, no matter the format, is one such goal, and I think worth even some pain, though of course it should be the minimum of pain possible.

Missing from both is another crucial marker of respect: apologizing to the client for doing something they disliked. And, in a larger critique, it is very problematic that, in this world, someone saying “please stop” is more likely to have their needs respected than someone who simply pulls away, and someone who pushes someone else away is more likely to be labeled as “aggressive” than “self-advocating.” That needs to change. In the meantime, there are better and worse ways to teach someone how to lodge a verbal protest. I got to see both.

* Note: there’s a lot of confusion about terminology, especially in America, where anything that can plausibly, or even implausibly, be labeled “ABA” gets the title so as to be covered by insurance companies. The briefest overview I can provide is that Applied Behavior Analysis (ABA), a particular subdiscipline of behavioral psychology, has given rise to a wide range of “interventions” and “therapies.” The classic ABA therapy is an aggressive and rigorous program of DTT, based on the work of Lovaas, who wanted to make autistic people become, or at least appear, “normal”… and cure men who acted in any way effeminate or homosexual. Most autistic people consider this to be despiccable at best and outright torture at worst. More modern approaches such as PRT now apply behavioral principles in ways that are gentler, more flexible, more naturalistic, and more enjoyable for the client… but their goals are often (though not always) still based on the premise that becoming more “normal” in various ways is a reasonable goal for autistic children. Most autistic self-advocates and their supporters are deeply uncomfortable with this notion, too.

Coping with Awkwardness: Sexual Play in Children

Anyone who thinks that children have no sense of sexuality (of some sort) hasn’t spent much time around children. As any parent discovers pretty quickly, children are curious about their own bodies, other people’s bodies, and the peculiarly appealing secrecy and sensitivity of their genitals.

Typical children learn, at a fairly early age, to keep their private parts more or less private. Children with developmental disabilties often take much longer to learn this– for several reasons, and not just because they take longer to learn a lot of things.

One reason is that they don’t get the same social cues about embarrassment (from other children) that typically developing kids do. There’s an age-range at which typical children obssess intently about potty talk and related topics, learn the rules about keeping certain things private, and then make a very big deal when other children break those rules, thus enforcing a certain behavioral code among their peers.  Children with disabilities are often not exposed to this kind of peer group, and may not even get any verbal input from others their own age, and may observe less consistent behavior among the peer group they are in (such as a special education classroom). Lastly, children with disabilties often have a diminished sense of privacy because they need help with personal care (such as bathing and toileting or diaper changing) for much longer than other children, and have to accept this help from a wider variety of people– parents, teachers, therapists, babysitters, and so on.

As a result, one thing I deal with quite often is the issue of children touching their genitals while I am caring for them. Children “play with themselves” in the bath, stick their hands down their pants, and so on. Sometimes the actions are definitely voluntary, sometimes less so. Male children get erections regularly, especially in the bath.

The question for me is how to react in these situations. On the one hand, a certain amount of sexual play is normal and healthy. I don’t want to discourage it or shame children for it– especially, I don’t want to make children feel embarrassed about the fact that I have to see their private parts at times, since this isn’t optional.  And I don’t want to teach children that their genitals are dirty or naughty or wrong.

On the other hand, it would not be at all appropriate for me to actively encourage or condone sexual activity of any kind… That would be a form of sexual abuse, because in some way I feel I would be participating in the activity, if only by acknowledging it openly.  Some of my clients are at the age where I feel it’s important for them to get some level of sex education, but it’s not my place to give that education unless the parent requests it specifically (maybe not even then– and certainly not without another adult present).

The main thing is that I feel sexual exploration should occur in private… but when do these children have privacy? Most typical children experiment with their genitals in the bath and/or in bed. But the children I work with are bathed by adults. Even the most independent of them generally have me in the same room while they bathe and use the toilet. At night, not all of them sleep alone, and many wear diapers to bed, which I suspect limit self-exploration.

So, my approach is to generally pretend I don’t notice. If the child is in the bath, I will simply look away if they seem interested in exploring their body. I do not wash them or touch them any more than necessary for their safety while they are having an erection or touching their genitals.

If we are in public, I will generally try to intervene as subtly as possible.

(The issue of crotch-grabbing is further confused by the fact that it’s often a sign that a child needs to use the toilet. If I see a child put their hand between their legs, my first response is generally to suggest a potty break.)

For some children, I feel that it is appropriate to offer a quiet, verbal reminder in a neutral (nonjudgmental) tone of voice, such as “Remember, it’s not appropriate to put your hands into your pants in public.”  Some kids undress in public as well (or even have clothing fall off!) and then, too, I might say something about keeping private parts covered. A lot of the older kids, at least, know the rules of bodily propriety intellectually, and I don’t want to embarrass them by calling excess attention to what they are doing– which they may be doing absentmindedly, or having forgotten that other people are around, or simply through failure to control their own actions (autistic people, in particular, often express experiencing a wide disconnect between what they intend to do and the actions they find their bodies taking).

Mostly, though, the best trick is to notice when hands are headed in the wrong direction and gently brush them away from going further, or give them something else to do (ask the child to clap or hi-five, hand them something, etc.– without ever mentioning that there was something else you DIDN’T want them doing). Called “redirecting,” this last tactic is also very helpful for helping people break habits (semi-automated activities) like biting their nails or pulling out their hair– you catch them before they are even entirely aware of what they are doing, and get them to do something else instead, and eventually their motor pathways get rewritten. It’s far more effective than drawing someone’s attention to something and telling them NOT to do it– like pointing out that someone shouldn’t scratch an itch, focusing attention on a forbidden action can make someone feel more compelled to do it! (This is, by the way, why nagging is such a terribly ineffective technique).

I think the success of any of these techniques depends on my own ability not to be (or at least not to act) embarrassed. I’m by no means perfect at this, but I’ve made a lot of progress. I think that so many of the mixed feelings many children get about privacy, sexuality, and especially masturbation, stem from their own parents’ discomfort with having to address these topics. Fortunately, regular childcare tends to cure you of two things: the ability to be grossed out easily, and the ability to be easily embarrassed!

One thing I have not dealt with yet (to my knowledge!) is the issue of any of my clients developing a crush on me. I’m open to suggestions on what to do if that situation ever occurs!!

New Clients

As always, I am so very behind on stories of my kiddos. Sadly, Rhythm has been moved to another care program (I believe he now has a nurse attendant) due to increased seizures. I do miss him. In the meantime, I have two new autistic kids on my roster– a moderately verbal 11-year-old girl with a relatively uncommon genetic disorder, and a 7-year-old boy with a diagnosis of classic nonverbal autism.

I quickly became one of the 11-year-old’s favorite people. Among other reasons, I like one of her favorite singers and can sing her most famous song fairly well. I am going to call this girl Euterpe, after the Greek muse of song, because she is passionately obsessed with music, particularly pop songs with female vocalists. I spend most of my time with her singing, or else making other sound effects on request (animals, vehicles, you name it). She lives with a typically-developing sister, whom I’ll call Calliope (muse of epics– she does love to write!), and a mother who seems to be in a state of perpetual motion, effervescing with ideas, plans that change every few seconds, and a humming, cheerful energy. I find her overwhelming from a sheer sensory standpoint. It’s a good thing Euterpe is someone who primarily seeks rather than avoids sensation!

I’m just getting to know the 7-year-old boy, but I find him immensely charming already. He buzzes around the apartment– climbing, touching, observing everything, never still, flitting like a hummingbird from one entertainment to another, hands a-blur in the air. His high, clear voice echoes the words others use in perfect intonation but an octave higher. He seems to want to take in the world– touching everything, getting on top of or above everything, and always bouncing, bouncing, bouncing… then concentrating intently on a single activity that catches his attention– a table full of playdoh, shapes to cut out of paper (his fine motor skills are amazingly good), cogs that fit together, a youtube video of Thomas the Train. He has a slightly older brother and a mom and dad. His parents are very affectionate with him, and his mother seems to know him very well in the sense of being able to predict his actions and moods in that way mothers can, but I get the feeling no one quite understands him, which makes me sad. I’ve sat through one ABA session with him and wound up more or less hating the behavioral technician. Euterpe’s ABA tech is much better, and her supervisor is pretty excellent as people in these programs go.

I’m also working with a 10-year-old girl with Down syndrome, which is a very new experience for me and not at all what I’m familiar with. She’s a very determined and independent young lady, and fortunately, I mostly just have to keep her company, which involves letting her lecture me on every topic she can think of and drag me around by the arm like a favorite doll. She’s a bit on the bossy side, and I’m working on figuring out how to assert myself with her without being confrontational. I’ll admit– having kids who argue back when I ask them to do something (instead of giving me a simple yes or no of some kind) takes getting used to!

Interconnectedness, science, ABA, and autism

June 4, 2014 6 comments

[Quick amendment: the term "ABA therapy" actually refers to a fairly broad category of therapies based on the science of Applied Behavior Analysis, a branch of Behavioral Psychology. Because so many different approaches and programs are referred to as ABA, there is a good deal of confusion about the term within both the autistic community and the clinical practice. Generally, the ABA-based programs designed for use with autistic children seek to gradually alter specific behaviors (including actions that we ordinarily call other things, such as speech or eating), relying heavily on externally provided reinforcements, which are things that make a person more likely to repeat an action. A very simplified example: if you give a chocolate-loving child an M&M every time they say "hello," the action of saying "hello" is likely to become a lot more frequent!]

[Second edit: Unfortunately, programs listed as "ABA" consist of everything from abusively rigorous training that teaches autistic children to suppress being themselves (classic/Lovaas-style ABA)... to play-based activities (such as Floortime and PRT) that focus primarily on the child being able to communicate their needs to their caregivers. Most "ABA", even more unfortunately, falls somewhere between those two extremes, and it can be very difficult to untangle which methods are most problematic, and how, at first glance.]

***

I was talking with an ABA supervisor the other day, and she said something along the lines of “We know ABA works, and it works for just about everyone. We know because we’ve seen it.” And yes, ABA is a way to teach autistic children (or anyone else) certain skills. We’ve not only seen it, we’ve measured it and charted it and pinned it to the walls of innumerable institutions. But that doesn’t tell the whole story.

Because here’s the thing about science, and I say this as someone who loves science and has worked in research: In general, you’re only going to find what you’re looking for. And the ideas that are easily tested and easily measured, with results that can be easily quantified, are a lot easier to support than some broader, deeper, more complex ideas– the kind that are often critical to humanity. There’s a reason why most physics or biology books generally agree with one another, while most books on ethics or childrearing or religion do not.

Some things you can demonstrate fairly clearly with lab equipment and numbers. Others you can’t. This puts the quantifiable ones at a significant advantage in our culture. But does that mean they are better ideas?

***

ABA is the “standard” therapy for autistic children, because it provides results that are quick and quantifiable. Any observer, even an untrained one, can see the “progress.” The child learns to sit quietly for 3 minutes, learns to use a spoon, learns to ennunciate the word “cat” when presented with an image or the written word, learns to give a “high-5,” learns to request foods or other desired items by pointing to pictures, learns to say “I need a break” instead of tantruming, learns to say “nice to meet you” when introduced to strangers, learns to match a picture of a bed to a picture of a bedroom rather than a car.

Many of these are useful skills, yes. Many of them can be learned this way, yes. I do not object entirely to ABA as a concept (note that I am talking modern ABA– there are programs that use no aversives, include naturalistic settings, and do not rely entirely on DTT– not classic Lovaas-style ABA). ABA has its place. But that’s not the whole story.

[Another Edit: When I say that ABA "has its place," 1) I am not necessarily recommending it for all autistic children. If anything, I think it should be more often offered to non-autistic children... and adults. And anyone who is thinking about adding it to their autistic kid's schedule should speak to autistic adults who have had ABA therapy and learn what things absolutely need to be avoided in a therapist/program. 2) I'm talking about a few hours a week, maximum-- the same amount of time you'd put your kids through any other stressful learning program like music lessons, advanced subject tutoring, or a very competitve sports program.]

***

By contrast, I would like to offer here the bane of many hard scientists: the anecdotal, subjective story (if it makes you feel better, you can call it a case-study). The author writes:

I knew how to read long before I could speak. There were no responses I made that would have given anyone any indications that I was reading. I even tore the pages and ate them because I wanted to keep the words. There was no way that anyone could tell that I was reading or not. I did not react or respond appropriately because I could not…

…Once I suffered Guillain Barre syndrome after an allergic reaction to a flu shot, and was paralyzed for a time. I couldn’t bat a fly on my face. My mom insisted on a homebound teacher, although I couldn’t even breath on my own and was unresponsive. The teacher came by and gave me an education that would have been the same as any other student my age. I could not respond. Did not respond. He could have been instructing the wall paper for all the indicative responses I gave. I was given tests even. He read them out and read out the multiple choice answers as well, going on to the next question without ever receiving any sort of reply.

Eventually he was gone. Never knowing he ever made a difference, perhaps wondering if it was just two hours a day of talking to himself. Actually he did some of this. Talking absently as if to no one was listening. Going through history and science and literature. But my mind drew pictures taking me to places he described. Discovering sciences. Such subjects that were never before wasted on me.

It was the best education I received. Without the teacher ever knowing that it meant anything at all. Like giving an education to someone in a coma never knowing if the other person is receiving the intended message….

…It was years later when I could express the remembered lessons.

 

Please reread that final sentence. Read it several times. Because it’s really important. And it’s not an isolated case, either. Time and again, autistic people report that, as children, they absorbed vast quantities of information that they could not express until much later. This is an important story. For the more data-driven among you, I refer you to the following scholarly articles: http://www.traininautism.com/Mottron/2007%20Dawson%20psychological%20science.pdf and http://www.epubbud.com/read.php?g=ET5HW22S&p=1.

My point is: just because we can prove that ABA “works” does not mean that it is the optimal or ideal strategy. It is, however, much easier to test and demonstrate the effectiveness of than, for example, lecturing a child on subjects to which they show no response or give incorrect answers for years before they are finally able to demonstrate their mastery.

***

A more important question than “is ABA optimal?” may be “what do we risk losing by using it as the primary method of teaching autistic children?” One obvious failing is that it takes up a lot of time– time that autistic students could use studying material more appropriate to their actual intelligence. Another consequence we can reasonably postulate is that such students may come to dislike studying or school environments, or may stop believing in their own intelligence (see self-fullfilling prophecy/Expectancy Effect). It is also, I suspect, common for ABA therapists, who rely on the ABA methods to assess skills and learning, to underestimate the intelligence and competence of their clients. The resulting inappropriate evaluations of children’s potentials may then lead to these children not being given the opportunities, responsibilities, freedoms, and academic access they need and deserve to move forward in life towards independent adulthood.

Are you worried yet?

ABA also fails to take into account that autistic children often show intelligence in quirky ways, and find creative workarounds for areas where they struggle. An ABA evaluation of language competence would likely be unimpressed by the little boy who barely ever speaks, but uses the word “spoon” to ask to go to Wendy’s for his favorite treat– eating a chocolate “frosty” (example adapted from a true story). The language is functional in that his family understand it, but is ultimately considered incorrect and won’t do him much good with strangers.

Perhaps you agree that it’s better for him to use the proper word, and perhaps it is. It certainly will make his life easier in certain ways if his language usage is limited to what the majority of his listeners can understand easily. But if we focus narrowly on teaching him to say only what others understand, would we stifle the incredibly creative and poetic language usage so many nonspeaking autistics develop? Emma’s term “motorcycle bubbles” (meaning fireworks) comes to mind, as does Tito Mukhopadhyay’s breathtaking metaphoric explanation for some of his unruly actions– “Thinking of apples and doing bananas” (quoted in the problematic memoir “Strange Son” by Portia Iversen).  The step before that might have been answering “apples and bananas” to the question “why did you throw that?”… a response which any ABA therapist would correct to something like “I was upset,” which in no way supports and encourages the child who is trying to make an important point.

***

Human beings are complex, chaotic systems, with a lot of interconnected bits that we don’t understand very well. Sure, you can look at the short-term and most obvious effects of something like a specific teaching strategy, but the more global, wholistic impact is harder to assess. A certain method of teaching history might produce high SAT scores, but ultimately result in a student who hates studying history, or becomes worse at critical thinking, or becomes obsessed with politics, or becomes embittered about humanity.

Perhaps this sounds a little absurd, but I’m really not reaching here. You can teach a child to be very obedient, which looks like a good thing when they eat their vegetables and do their homework, but then perhaps they become a rebellious teen and engage in dangerous behaviors, or get into an abusive relationship because they have lost the ability to say No. Yes, I’ve seen these things happen many times. Can I prove a causal link? No. Have I seen enough cases to make me worry about the most well-behaved children, the ones who never protest? Yes. You pull one string and find it connected to an entire spiderweb, a constellation of thoughts and traits and feelings.

***

Let me leave you with one last attempt to change your mind. I’ve used this metaphor before, because I feel it is apt.

There was a time, not that terribly long ago, when Deaf children in the United States were taught lip-reading and speech, and the usage of any kind of sign language was discouraged at best and heavily punished at worst. The prevailing notion was that this was for the children’s own good: sign language would make them stand out, wouldn’t be comprehensible to most other people, and would therefore prevent them from ever being able to fit into society. I suspect a lot of earnest research went into the best ways to teach lip-reading and speech to the Deaf– and it was a laborious, difficult process for both student and teacher which rarely if ever produced perfect results. Some of the best students, of course, succeeded marvelously and went far in life, and most learned at least something, both of which must have seemed to justify the continued practice.

I’m sure it took a major shift in the thinking of authorities to finally realize that Deaf people who were permitted to use their own languages could do and think and express and learn so very much more. It would have been nice if they had started out by listening to Helen Keller (yes, amazingly, she did learn to speak, but only after she had learned tactile ASL), or an island community where almost everyone was bilingual in spoken and signed language. Maybe then they could have envisioned a future which included a Gallaudet University that graduates thousands of students, the beauty of Deaf-Jam poetry, and the realization that infants can sign long before they can talk.

I’m glad we got to that future. I hope the autism authorities will start listening more seriously to the autistic community, so that autistic children can look forward to a brighter future of their own.

Personal Interlude: Black Dog on a Leash (Living with Chronic Depression)

I am a disability-positive person. I see beauty in human diversity, and believe there is great value in the varieties of body and mind and the great wealth of experiences that ensue from those differences. That being said, I don’t always see disability through rose-colored glasses.

Depression, like chronic pain, like most chronic illness, is one of those disabilities that’s hard to live with no matter how well it is accommodated. In fact, depression is not only a chronic illness, but also a form of chronic pain. The weight that sits in my chest may be metaphorical, but the pain is real, and at times even physical.

Yes, it would be nice if I didn’t face stigma and misunderstanding, but in my own life, those problems have been relatively minor. At best, I might have been diagnosed and started medication a few years earlier. No one has ever really been cruel to me on account of my mental illness, and no one has ever taken my freedom or any other of my rights away because of it. In this, I know I am lucky.My battles are not the same ones that many disabled people face.

Depression makes it hard for me to accomplish things, have ambition, follow my dreams. It means I’m often years behind on things like routine doctor’s visits, and other things that adults are supposed to do regularly. It’s the reason I only have a B.S. at this point, not a PhD. It’s why I work part time for barely above minimum wage, and have always worked for far less than I am worth. I am lucky– very lucky!– that I have always had other resources to fall back on, and am not living in poverty. I am lucky I have not had to file for disability status– many of us with mental illness and chronic fatigue fall into the cracks in the system because we lack the energy to even do things like file the paperwork for the help we need.

But even if money arrived on a silver platter and doctor’s visits came right to my door, at least to some extent I would still be suffering, and not in a way that anyone could do anything to change. I do suffer– SUFFER– from depression. I use that terminology very deliberately. Depression hurts. Chronic fatigue hurts. They hurt most of the time. Sometimes they hurt almost unbearably. They grind me down, hold me down, wear me down. They make it a struggle to get up in the morning, to eat, to breathe– never mind things like keeping friends and finishing college. There are times– so many times– when all I can do is curl myself into a little ball around the pain and whimper. I lose a lot of time that way.

***

What to do? More medication? Different medication? Maybe. Each comes with its own side effects and risks, and not always obvious ones, either. A myriad of other suggestions– from polite to aggressive– beseige me constantly. They range from utter nonsense to pure common sense, from free and easy to massively expensive in money or time/energy. The one thing most of them have in common is that I lack the energy to even attempt them. At least here I’m in a holding pattern, treading water– maybe not doing well, but functioning at a level I can survive with. And that’s no small thing. I do fear losing that balance. As hard as I find life right now, I am living and breathing and moving forward. I may not be doing well, but I don’t think I could stand to be doing any worse.

***

All this being said, I live well with depression– really! A lot of it is luck– like I mentioned, I’ve never truly struggled financially, I have plenty of good friends, my life has been remarkably free of major tragedies and other situational causes for depression– and (believe it or not), my personality is a pretty happy one. It’s an odd combination, actually– I’m a fairly cheerful, optimistic, fun-loving, easy-laughing, moderately-positive-thinking, stop-and-smell-the-roses kind of person… who just happens to spend a lot of time in intense emotional pain over absolutely nothing at all. Depression is a really weird thing when you get right down to it. It made far more sense when I was an angsty teenager with no romantic prospects– being miserable, cynical, and bitter meshes well with clinical depression. At that point, I had no way to know I was suffering from an illness; it made sense to be unhappy. But having trouble getting up in the morning when you have a pretty awesome life is harder to understand, even when you’re the one experiencing it.

A doctor recently gave me one of those depression rating scales to fill out. Then, after talking to me, she said “You know, you have a pretty great attitude for someone who scored this high on the depression scale!” I laughed and told her “I’ve had a lot of practice.” And it’s true that the mental tools I’ve developed to help me cope make a huge difference. They don’t lessen the pain, but they allow me to keep going in spite of it. Many of them are simple practical tips– get enough sleep, eat every day, don’t make any major decision while feeling depressed– and others are more like mantras, things I wouldn’t accept anyone else saying to me but I need to hear– like “remember, your brain lies to you,” and “it’s only pain– it can’t actually kill you,” and “it won’t hurt any less if you give up and collapse, so just grit your teeth and keep going.” I suspect everyone’s the little phrases are different. Some of mine are pretty weird, too. But you tell yourself whatever you have to in order to keep going.

***

My body hurts. I’m tired, and tired of being in pain. I didn’t get nearly as much done today as I wanted to, although I did accomplish a fair amount. I’m not looking forward to going to bed because I know I’ll be even more tired in the morning. And I meant to spend this time catching up on writing book reviews, but oh well, I suppose I needed to write this too. I wish I had more time– no, more energy– energy in a day: the time is there, but I can’t use it.

And I can’t think of how to end this, so….

Being tired is not the same as fatigue.

Restless Hands:

Yes, this. Very much this.

Originally posted on Ballastexistenz:

Being tired, even being exhausted, is not the same as the kind of fatigue that people with chronic illnesses are dealing with day to day. And I knew this, intellectually. But after going on steroids to treat adrenal insufficiency, and getting some stamina back, it’s like a revelation.

I haven’t really had much in the way of clinical fatigue since I got on steroids. I only feel it on my bad days, and my bad days aren’t all that bad compared to how they used to be.

I do get tired. I get exhausted. But even at my most exhausted it’s not the same.

Fatigue, when talking about in a medical sense, is more than exhaustion. It’s a sense that everything is drained from your body. You don’t just feel tired, you feel sick. Your body doesn’t work right.

I wish I could just upload the feeling into people’s heads…

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Categories: Uncategorized

An Open Letter to Wendy Chung and Everyone Else Who Worries About Autism

(So, it would have been nice if I could have written this for the Autism Positivity flash blog, or Blogging Against Disablism Day. But life doesn’t always work out that neatly, and I only saw the TED talk two days ago and the words to respond didn’t come to me until now. I’m tagging it for those days anyway, even if it is a week late)

***

So, for all of you out there wondering what we should “do” about autism, STOP. Just stop right there.

Because you shouldn’t DO anything ABOUT autism– you should do something FOR autistic PEOPLE. And what you should do first and foremost is listen.

They will tell you, in words and text and pictures, that they don’t want to be fixed, don’t need to be cured, and above all, fear being prevented.

Those who struggle to speak have thoughts and feelings and lives every bit as valid as your own. They think things like:

We are not lost.

We are not missing.

We are not a mystery.

We are not broken.

We are not incomplete.

We are not worth less than any other person.

Don’t push us away.

Don’t try to get rid of us.

Don’t try to change who we are.

If you still our hands, you stifle our voices.

If you emprison our eyes, you oppress our hearts.

If you teach us self-hatred, you keep us from our dreams.

If you try to make us just like you, you will lose us twice over, for you will destroy the person we truly are in search of a person we will never be.

***

…I had to leave a party today– a calm one– after less than an hour. The sound of Fifteen Voices in one house– talking, laughing– hurt me so much I felt physically ill…

…Earlier in the day, I went to a classical concert, and sketched the images that came to me with the music…

…I wouldn’t know fashionable if it bit me on the ankle…

…I am moved to tears by the beauty of car tailights…

…my hands flicker in joy at the feel of pine needles, of sea-smoothed stones, of velvet and fringes and tinsel and silk…

…I take words too literally, sometimes. I have to ask, often, if someone is joking…

…I seek out foods with interesting textures…

…I collect shiny bits of paper– shiny bits of anything, really…

…I hate shopping malls with a passion. Too much to see, hear, smell, too much, TOO MUCH TOOMUCHTOOMUCH…

…”Weirdo,” they called me in grade school. “Oddball. Freak.” The adults were more polite. “You’re so unique,” they’d say to me, “so interesting“…

***

In the video (and many others like it) the doctor describes a nonverbal boy who cries and screams and rocks and flails in frustration, even hitting his head, even hurting himself. Her voice is resonant with shock at the tragedy. Another boy, she says, “shuts down” when he is overwhelmed. Sure, he’s smart, but he struggles with socializing, with Making Eye Contact (the Holy Grail of Western Civilized Behavior). Her voice is rich with sympathy, with pity. She dreams of something to make these boys Normal, to make them Speak and Look and Act like herself and others like her. Maybe, she says, with coaching, the shy, withdrawn, smart boy could even… date! The audience laughs kindly, applauds politely. How nice that would be, they think.

Did the doctor (and so many others like her) ever ask these boys if they want to be normal? Whether or not they are unhappy, and if so, why?

When she talks of searching anxiously for the genes that caused their existence, does she think about how this might make them feel? (How eager we are not to have any more like YOU!)

Perhaps she knows that these boys have strengths and joys, too, but it would never occur to her that their weaknesses and struggles and flaws are every bit as human as her own, every bit as acceptable, every bit as undeserving of shame. Who among us is perfect, after all? Such a person would be truly inhuman.

I have more news for her, and for others like her.

Those people she talks about, those AFFLICTED with autism spectrum disorders… they learn and grow and laugh and love. They go to school, to college– often!– and even to grad school. They hold jobs, many of them. They fall in love, get married, have children. Yes, even those who bang their heads and flap their hands, those who didn’t speak until years after their peers. Delay does not mean inability. Atypicality is not synonymous with failure. Doing things in an unsual order or unfamiliar way doesn’t mean you can’t do them at all.

Those of us who struggle with “normal” socializing — junior high’s freaks and geeks– make deep, solid, long-lasting friendships, often with others like us. Sometimes we oddballs band together and do amazing things. You’ll find us in the chess club, and the theater groups, in musical ensembles and computer programming camps. We hang out with other minorities, with the outcasts and fat kids and bookworms and cripples and queers and those who live between cultures and feel out of place. We find strength in our struggles. We draw insight from our outsider perspective. We are often kindhearted, as we know what it feels like when others are cruel.

And many of us love our lives. Those of us who rock and wail and flee from crowds and dig our nails into our hands until we draw blood… we do not hate ourselves unless you teach us to. Being strange has as many perks and privileges as it does drawbacks. The same sensory sensitivity that makes us cry in the supermarket allows us to hear the music in a single drop of water ringing against a glass. The obsession with detail that makes us line up our pencils Just So and count every crack in the sidewalk can make for brilliant scientists, mathematicians, artists.

***

I don’t have an Autism Spectrum Diagnosis. I may or may not qualify for one– I still do not know.

My roomate does have a Diagnosis, and so do the majority of my friends. So do many of the children I work with professionally. I love the kids I work with. They all remind me (a little bit, in various ways) of myself.

I wouldn’t wish for any of us to be any different than we are.

I hope for more people like us in the future.

I hope for a world where we are accepted and loved, where our weaknesses are supported with compassion (not pity), our strengths are encouraged to grow and shine, and our innate value as human beings is never questioned.

Please don’t seek a cure for autism. Seek a cure for ignorance, for misunderstanding, and for intolerance.

Autism is not a disease, it is merely a difference that a minority of people are born with. Help us learn to fly, and watch us soar.

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