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Autism Appreciation

This is a post I started in April, but then stuff happened and I didn’t finish it. So let’s just pretend this is Autism Appreciation Month. Actually, all months should be a time for appreciating autism.

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Twice, recently, people have complimented me on how positive I am towards and about my profoundly autistic clients– you know, the “severe” ones who don’t talk and self-injure and have all sorts of “Behaviors.” People seem to think it’s special that I consider these kids awesome. They congratulate me when I talk about learning to communicate with them in their own nonverbal languages, when I see their good points rather than their so-called deficits.

I find this both baffling and somewhat sad. Why doesn’t everyone see these kids the way I do? I’m not being charitable towards them; I honestly enjoy their company, often more than I enjoy the company of neurotypical adults, and certainly more than I enjoy the company of most non-autistic children.

Really, what could be better than spending an afternoon with someone who enjoys my company but doesn’t expect conversation? Isn’t it more fun to be out and about with someone who notices the oddest little things that others overlook? What’s not to love about seeing someone jump and flap with excitement when they see something they like?

And if they sometimes lash out, or show me that they are in pain, how can I blame them? It’s hard to be a child even when the adults around you do speak your language– imagine how overwhelming it must be when they don’t! But I’ve found that showing sympathy and respect even when I don’t understand goes a long way towards bridging that gap and reducing those “behaviors” that bother others so much. Working to create a small, shared world between two very different people (such as those who speak another language or come from another country) is a magical experience to me, far more enjoyable than playing a team sport or engaging in a competition.

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I am also amazed by how much people often manage to overlook the strengths that come with autism. Let me start this part by stressing that I am Not saying that autistic people are childlike. However, many of them keep certain skills that neurotypical people usually lose at a young age.

Autistic people have a certain intensity of focus, an ability to ignore the irrelevant and see beyond the obfuscating obvious. They are able to enjoy themselves with equal intensity, with an unselfconscious joy that everyone should envy. Sadly, many autistic people so end up self-conscious about their behavior, but only because other people have taught them to be. Even in those cases, adult autistics usually retain the ability to be playful and creative in ways that most non-autistic adults aren’t. We see nothing awkward or “too silly” about joining in a child’s activity. We don’t feel too dignified for a game of make-believe or for sitting on the floor or for loving a children’s story.

By the age of 3, non-autistic children start being judgmental about other people’s appearances and adherence to social norms, and by age 5, they are downright cruel to others who don’t meet their standards. Many of them never outgrow this behavior, and those who do often don’t outgrow it until they are adults. Before they learn to be polite, non-autistic children will come right out and tell me if they think I don’t look nice or that I am awkward. I’ve never had an autistic person, verbal or not, show this kind of pettiness towards me.

Non-autistic children are fiercely competitive, obsessed with the idea of being better than one another, which is another way of being judgmental. Autistic children are rarely so focused on creating these kinds of hierarchies, although non-autistic adults try very hard to teach them that winning is important by insisting that they play structured, competitive games, at which point they might get obsessed with winning, probably not because they care about besting others, but because autistic people tend to be perfectionists.

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Obviously, everyone is different, and of course there are some autistic people who are very competitive, or exclusionary, or focused on meeting arbitrary social standards. But in my experience, they are relatively rare.

Autistic people are thoughtful. We enjoy our own company and can easily keep ourselves amused for hours on end. We are innately curious, and enjoy figuring things out, even if those things aren’t what others expect us to be learning.

Some people look at a child who has taken apart their toys and see destructiveness, misbehavior, and a nuisance. I look at the same child and see mechanical intelligence and insatiable curiosity. They look at a child who won’t stand in line doing what the other children do and they see disobedience or inattention or perhaps non-intelligence. I see a child who doesn’t care about conformity, who has other activities on their mind. A boy who crashes into things around the house may simply have trouble controlling his body or need more sensory input. A girl who seems cranky and picky may just have an unnoticed sensitivity to something that is easily avoided. A child who doesn’t speak may have a mind full of wonderful music or remarkable images or creative ideas, and just needs to learn a way to share those things with the rest of us.

Autistic people aren’t flawed versions of “normal” people. They have wonderful and fascinating characteristics of their own, and those things are so often overlooked because everyone focuses on the more obvious “deficits.”

Stop trying to help autistic people become more “normal.” Of course, help them learn to communicate and to do things for themselves so they can be independent. But that doesn’t mean they have to do things the same way you do. It doesn’t mean they have to play with their peers in order to have fun, or sit at a desk in order to learn, or care whether their socks match or their shirt is on frontwards. These things aren’t necessary in order to enjoy a good life.

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Love the autistic people in your life the way they are. Appreciate them for being their own autistic selves.

In fact, try and learn to be a little more like them. Reduce small-talk and other unnecessary speech. Become more aware of the sounds and textures and odors around you, so that you discover new things to appreciate and notice when others are too loud or strong. Stop comparing yourself so much to others and judging people (including yourself!) on arbitrary social standards. Compete less; play more. Observe. Think. Question the obvious. Develop your own tastes rather than going with what’s popular. Stop worrying about whether you look dignified or silly and just enjoy an activity. Be in the moment. Do something impulsive. Watch how someone does something without interrupting or trying to teach them how to do it your way. Let your body express your emotions. Find something mesmerizing to focus on. Shout for joy. Run around with no specific goal. Imitate birdsong. Be different. Let something random catch your attention. Rethink your priorities. Accept that the world is larger and stranger and more complex than you ever realized.

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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, to the best of my knowledge. 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 telling 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, although some activities are done while sitting on the floor instead.

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. “nuh,” the child says quietly, sounding annoyed, not looking up, still intent on the activity.
“Stop,” the tech corrects, prompting him to use the specific word that has been pre-determined in his program as a “goal.”
“Stah,” mimics the client. 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 camaraderie, 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 despicable at best and outright psychological 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.