Thoughts on Autism and Behavior Modification

As I said yesterday, autism sucks sometiems. This doesn't mean it needs to be eradicated. Then again, not eradicating it doesn't mean not pursuing treatment for its bothersome symptoms. I would pursue treatment for certain symptoms even in an ideal society. For example, I take medication for irritability and anxiety and see no reason not to.

Where it gets trickier is when I'm forced by circumstances to pursue treatment, and others dictate what kind of treatment I get. I may legally be an adult, but I am not in a position to live without supports, which in essence creates a power dynamic in which my staff largely determine whhih of my symptoms get treated and how. Behavior modification is staff's favorite treatment modality, and even though originally, behaviorists tended to include the environment in their assessments of behaviors, B-mod has largely gone down to ignoring and/or punishing "negative" behaviors and sometimes rewarding "positive" ones.

I put these two between scare quotes because, what is perceived to be a positive or negative behavior, is not always (or rather, is rarely) objective, and even when a behavior is by most perceived to be positive or negative, the way it's handled may still vary depending on people's perceptions of what is behind said behavior (which, I might say, the original behaviorists didn't care about). For example, as long as I'm not acting out aggressively towards others (which icnludes mild verbal aggression), I can exhibit as much self-directed violence as I need to. I assume the idea behind this is that I'm borderline and borderlines need to be responsible for their own behavior and its consequences. I've had people seemingly more annoyed at the fact that they had to take care of my physcal wounds than concerned at the fact that I'd inflicted them.

Now we've moved past the times when cognitions, emotions etc. didn't exist. Lay behaviorists (ie. most staff) have taken just what they want out of behaviorism. I remember in 2008 my diagnosing psychologist recommended a functional bheavioral assessment on my meltdowns. This includes close observation of behavior, antecedents and consequences, in order to hopefully find the stimuli that trigger the aggressive response. Now I've not yet figured out what I think of this, but I never got to, since such an assessment never took place. The staff introduced seclusion, used it as a threat when I became even slightly irritable, noticed that made my behaviors decrease and decided this was the cure.

Now let me tell you: autistics have as much emotion, cognition and sensation as neurotypicals, we just experience it differently. If you wouldn't want to be subjected to harsh behaviorism yourself, then don't subject an autistic to it. If you want to eradicate a behavior, observe its situational context closely and consider how you would respond in this situation. Is the autistic perhaps trying to communicate the same that you would in this situation, only using a different modality? Are they perhaps responding to sensory overload the same you would, only experiencing this overload differently than you would? If so, consider meeting the autistic's needs beofre you attempt to modify their hehavior. If you want to modify their behavior anyway, consider whether you would want your preferred B-mod method used on yourself. I think everyone who has the power to seclude, restrain or tranquillize another person, needs to have expierenced it themselves first. Lastly, don't assume that just because the autistic isn't displaying behavior that annoys you, it means that they're coping fine.

This Is Autism

Last week, Autism Speaks told the world that autism is a number of bad things, including fear of the future, life in despair, a burden, etc. As a response, there's a flashblog going on today where autistics and allies submit their art, videos and blog posts on what autism really is. Here's my contribution.

Let's start with the facts. Autism is a developmental disability that causes problems in information and sensory processing. This leads to behaviors such as repetititiveness, withdrawal and different ways of communicating and relating to others.

Autism for me has both positive and negative consequences. One of the phrases that Autism Speaks likes to associate with autism, is in fact correct for me: fear of the future. This, however, is a pretty common fear in today's society. We're (here in the Netherlands) still in economically hard times, and I personally witness people worrying about whether they'll get a job, sell their house, etc. These are fears for the future. They may not be the same as mine - I worry about health care cuts -, but it's not like my worries are unique to autistics and their families.

Autism sometimes makes it harder for autistics to participate in society - or is it society's unwillingness to adapt to autistics' differences? These differences, in my case, include inabiity to handle intense, unexpected stimuli and/or multiple stimuli at once. I know that not all these can be prevented, but it's people having a mindset that autism is ultimately something that needs to be eradicated at least on the surface, that makes it worse. This attitude leads to people seemingly deliberately ignoring my sensory needs for the sake of treatment. And no, this is not a consequence of autism, this is a consequence of intolerance.

I will not go so far as to say all autistic experiences are due to discrimination. As I said, not all difficulties can be avoided. Yet neither can all difficulties for a neurotypical. Some autistics, including myself, have it harder than most neurotypicals. I won't deny this, and I won't deny that autism sucks sometimes, but so do a host of other experiences that we don't give nearly as much attention to eradicating as Autism Speaks does with autism.

Appearing Indistinguishable vs. Being Yourself

Neurodivergent K wrote an interesting post on the tyranny of indistinguishability. I think I have quoted one of this blogger's posts before, on the same topic, but this one again has interesitng points.

Unlike what people believing in the indistinguishability logic assume, it's not like, once you've reached this goal,, you'll always continue to appear indistinguishable. In the preemie sphere, people often talk about catch-up, when in fact a lot of preemies do not just have developmental delays, but developmental differences as well. Same with autistics, but more so: all autistics are not just delayed (in fact, I'd argue against the idea that we're delayed at all), but rather different. Suppose that an autistic, who we shall name Joey, started early Lovaas-style ABA at age three, and, he being a pretty good student, reached the goal of indistinguishability by age six. Now I know that ABA proponents often argue that autism will not go away by age six, and some even argue for ABA for adults. I reckon that if it were truly effective in its aim of indistinguisability, it'd not be needed for life. Anyway, Joey makes for a pretty average-appearing first-grader thanks to his ABA. So the government decides to cut his services (I will get to this later) and he is mainstreamed. Joey performs on grade level in first grade, even though it takes him more effort to complete his schoolwork. Effort doesn't count, and Joey continues his schooling in second and third grade. Once he reaches fourth grade, his teachers and parents notice he is lagging behind. Bring in the ABA therapist again and make him appear indistinguishable again?

Autism parents who advocate lifelong ABA would say yes. I and other autistic advocates say no. After all, as Neurodivergent says, you can appear like a crappy excuse for an NT or you can be the best person you can be. Besides, effort does matter to the autistic. Suppose Joey is restarted in ABA and, through his façade of indistinguishability, slides through middle and high school, or so it appears. His parents don't care about effort, so even though he is increasingly depressed and exhausted, he is pushed until graduation. Then he leaves his parents' home and goes to college, where he crashes and suffers major depression, anxiety and other mental health symptoms. These are so severe that he needs to quit college and ends up on disability.

This story is not mine - I was not involved in Lovaas therapy and was not diagnosed till adulthood. I was, however, similar to Joey and other autistics in that normalcy was expected of me. Effort can't be seen and the people around me likely didn't realize how much it cost me to appear like a lousy NT. I am still trying to find out how to be my best self.

"Use Your Words."

Last Friday, Neurodivergetn K wrote a post on the phrase "Use your words.". I only read it today and, partly because I got triggered by this post, I am going to blow off some steam about this phrase. A lot may seem like a repetition of what Neurodivergent already said, but well, tthere can't be too many autistics speaking up against NTs putting their own arbitrary standards of normalcy ahead of our needs.

As readers who're familiar with me and my blog will know, I reside in a psychiatric institution. Its aim is rehabilitation. I've been on a ward that had an even more open rehabilitation-focused vision at least on paper, but staff there were much more willing to bend the rehab paradigm a bit to accommodate me than the staff on this ward are. Note that rehabilitation has two meanings in psychiatry, one in which the client is as much in charge of their care as possible, and the other where the client is trained to become (or appear) as normal as possible. I'm talking about the second meaning here, as I have absolutely no problem with the first.

"Use your words." As I wrote in a comment on Neurodivegent's post, this phrase is often accompanied by "You're intelligent" or "I know you can do it" or some variation on this theme. Let me address these follow-up phrases too.

"You're intellignet." And now what? Firstly intelligence is not the same as speaking ability. Second, what if I weren't intelligent? Would I be cut some slack then, or would my needs just not matter as much? A variation on this theme which I've come to hate almsot as much is "You're an adult". It has its own implications in light of my multiplicity, discounting part of me that actually isn't an adult. If I act like a child, maybe it's because at that particular point I am a child? I know the staff aren't going to buy into that since they've thrown out my DID diagnosis, but it's not like I'm any less or more multiple now that we call it BPD.

On a related note, telling me that my abilities are incongruent, isn't going to help me. I know they are. I know I'm sometimes able to do things that I can't do at other times. I know I'm able to do seemingly complex tasks but not simple ones sometimes. I know I can have quite spontaneous-looking, appropriate conversations sometimes and barely make any sense of my words at other times. Telling me this is not possible is denying the obvious. Telling me this is not appropriate is like telling a blind person to look harder because they can hear fine or telling a person who is night blind that they should be able to see in the dark because they could see fine during the day. (I know many night blind people are also partially sighted, but I'm simplifying the situatioon a bit.) It's not like developmetal disabilities like autism are any less real than visual impairment just because they're more difficult to understand and seemingly easier to overcome through behavior modification.

Let me talk about that now: behavior modification. I was going to write a separte post on that, and maybe I will write one more. Here's the thing: telling me to "use my words" will most likely get me to pull out a script. You didn't know I had them, clueless neurotypical who knows me just enough to see my non-autistic appearance but not well enoguh to truly listen? I may have somewhat more elaborate scritpts than the example Neurodivergent gave, but I do have them. This is why, when I'm interrupted or distracted while executing the script for telling the staff I'm distressed and need help, I often end up having a meltdown. And this script gets interrupted a lot of the time, oftentiems even by staff. They want exact explanations of what I want or need from them, even if they know pretty well what I need. I've sometiems gotten to ask for my PRN when that's not what I needed just because it was the shortest script in that part of my brain I could access. Asking for some quiet time with a staff member, which is what mostly helps me, is a much harder script to execute. Please know: "Can I say somethign/ I'm distressed," is not okay. It's got to be: "Can I please speak to you in a quiet place for a bit when you've got the time? I'm distressed." Sometimes I think it's NTs who are literal-minded.

People Aren't Broken

After being told she'd be officially diagnosed as autistic, Autisticook wrote a post titled I'm Not Broken. I commented on this post, but wanted to expand on and generalize this a bit more.

I remember when in DID meetings, there were people who didn't want to have DID, and people who felt the DID diagnosis somehow validated them. I fell into the latter category and was often told I wanted DID too badly. The people who felt their diagnosis was validating, often said it made them not be crazy. "I'm not broken, I was traumatized," one person said, incidentally in the meeting in which I was kicked out for allegedly having imaginary DID.

In my journeys as an autistic, I learned a lot of what Autisticook describes: autistic isn't broken. In my brief travels through the natural multiplicity community, I learned the same of multiplicity. Then I heard dissociators say they aren't broken but traumatized, almost as if their perps are responsible for every single thing in the dissocitors' lives that is remotely "broken", and I cringe.

I don't care who or what made you the way you are. People aren't intrinsically broken, and using neurology or abuse history or whatever as a reason for not being broken, only makes other people, who don't share this same attribute, look broken. Like, are people broken if their behavior can't be directly linked to trauma or neurology? I'd say they arent'. Their behavior may be unacceptable, but so may the behavior exhibited by autistics or trauma survivors.

I am not saying you can't use your neurology or experience as part of your identity. I do this all the time. What I am saying is that a diagnosis is at once no excuse for unacceptable behavior, and unacceptable behavior doesn't make you broken regarldless of your diagnosis or lack thereof.

Autism and Justified Anger

On my autism treatment and acceptance, Autisticook commented by saying that anger in an autistic is often justified. She compared it to the situation where a wheelchiar user gets angry because they are faced with yet another two-step staircase that wasn't necessary and where nobody thought of installing a ramp. This made me think: are we overpathologizing anger in people with developmental disabilities (and mental illness)? Are we incorrectly assuming that anger is part of the disorder, while it's just a response to a lack of accommodations? This is obviously not a scientific discussion, as what is a reasonable accommodation depends on your perspective.

I just a few days ago heard about cognitive accessibility, where people accommodate their language, for exxample, for understanding by people with learning difficulties. I'm trying to find an accessible and understandable explanation of this, but can't seem to find one. What I understan dit to mean, includes for example using simple, straightfoward language. With autistic people, you may need to refrain from using figures of speech, for example.

What if you were dropped in a country where you didn't speak the language and everyone refused to speak English? Would you get angry? Quite likely you would. Now understand autism as communicating in a different language, too. Is it strange then that the autistic gets angry when you routinely refuse to make an effort to speak their language?

Autism is not just a communication disability. It's in a way a sensory disability, too. Imagine, again, being in that foreign country and everyone shouting at you for whatever reason. They also randomly shine a flashlight at your eyes for whatever reason. In addition, this country is rich on insects, and they crawl over your body all the time. Would you get frustrated? Sure you would!

We do not medicate wheelchair users for getting frustrated at the umpteenth staircase. You would not want to be put on medication if you were in the aforementioed country. So why do we medicate autistics who are irritable? It's probably because accommodating them requires a radical paradigm shift in what we always thought access was all about. Is it a more radical shift than the shift towards wheelchiar accessibility? I am not sure.

Family Offered $86K to Take Son out of School, Waive Complaints of Abuse

I don't normally use trigger warnigns but this post sure requires one for graphic descriptions of abuse.

@mamabegood on Twitter just posted a news story that says that a family was offered $86K to keep their autistic son out of public school. That's what the title reads. The actual story is much worse and includes abuse at the hands of a teacher.

This story, unfortunately, is not an isolated case. Many children and adults with autism get abused by professionals in whose care they've been placed in one respect or another. The details of the abuse in thsi particular story remind me of a lot of "old-school" ABA therapy, where aversives were presumed to be the single most important factor in its success. David Swanson, the young autistic in this story, was force-fed by a teacher because he refused to eat with a metal rather than plastic fork due to oral sensitivity. Now imagine if I forced a sharp object into your mouth. This would sure be considered abuse. If you then vomited and I'd force you to eat your own vomit, that'd make the abuse even worse.

Honestly, even though this news report is generally okay, it's symptomatic of something I can't quite pin down that the most focus is put on the money offered to David's mother to take her son out of school. Is it that abuse of autistics is commonly excused because "they" (autistics) are difficult, aggressive maybe, hard-to-parent often, and many times won't meet up to the expectations of others? Please, if you've made it to this point in my post, let's join Mama Be Good on Facebook in a moment of silence. Thank you for reading.

Autism Treatment and Acceptance Are Not Mutually Exclusive

Oftentimes, there seems to be a dichtomy between those autism advocates who want treatment, and those who want the autistic to be accepted. Usually, parents of people with more severe autistic symptoms and/or intellectual disability want their autistic to be cured, while those autistics with more intellectual and communicative abilities advocate acceptance. This is not always the case, of course, but often it is. Therefore, it is somewhat understandable that autism parents tell autistics that we are not like their child.

What I want to discuss in this post, however, is whether treatment and acceptance are truly mutually exclusive. Of course, a cure that will fundamentally change a perosn's information processing, is contradictory to accepting that processing difference. However, at this point there is no such cure, like genetic engineering or neurological rewiring, which is what it would take to make autism go away entirely.

Do these autism parents who advocate cure, truly want their child's every autism symptom to go away/ I do not know, but it is possible that what they truly want to go away are certain aspects of autism that are debilitating to the child. I do not disagree with this. I, too, take medication to help curb my irritability, for example.

Truly, would you want your child's autism to go away if it made them a very much in their interest invested professor, if a quirky one? It is known that Temple Grandin is autistic, and yet she reached Ph.D. status. If I have to believe her own statements, this is largely due to her special interest and her good ability to empathize with animals. The same likely goes for other "higher-functioning" autistics, but then again these are discredited for disagreeing with the curebies.

Now I get to acceptance. As I wrote in a previous post, accepting the person is different ffrom accepting their every behavior. Hardly any autistic would want themselves or another autistic to be continually aggressive or self-injurious. Also, most parents tht I've met online who advocate treatment for their children's autism, actually love their children to pieces. There are a few who wish their autistic child were taken back by the changelings, so to speak, but these are rare.

So really, is it hypocritical to want treatment for autism if you want to be part of the autistic acceptance movement. While a complete eradication of autism, and thereby autistics, is contrry to acceptance, treatment for the most severe and disabling symptoms, is absolutely not. And this is where views often clash: those with more severely autistic children, want to pretend that treatment will eradicate all autism, and they at the same time pretend that those who disagree, are not autistic at all. Well, fine with me. If you want your child to be like me in terms of functioning, that's okay, but that is not curing them.

ETA: with my sentence about my understanding that parents want their kids to function like me, I didn't mean to place myself above autistics who appear to be "lower-functioning". I realize that's how it comes across. I do want to say that I understand, for example, that parents want their children to have a meaningful way of communicating or have minimal aggressive or self-injurious behavior. I do not feel that any autistic should be forced into neurotypical appearance.