Monthly Archives: November 2013

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.

Born Borderline?

Yesterday there was a discussion in a Facebook group about whether borderline personality disorder could be a brain condition you’re born with. The original poster started by saying she feels so broken and has her whole life that she wonders whether BPD is not just a mental disorder, but a brain dysfunction.

Now I want to say that a more severe disturbance has nothing to do with whether you were born with the condition. It’s not like, if you were born with it, that it’s necessarily any worse thn if you acquired BPD as a result of childhood trauma. Some commenters mentioned feeling their wacky childhood may’ve been due to their BPD rather than vice versa. Does it truly matter? I don’t think so. Like, people are usually born autistic, but this doesn’t mean all that happens to the autistic growing up is due to autism.

From what I understand, BPD is caused by a combination of temperament, which is largely genetic, and childhood circumstances. There was this debate in a Dutch women’s mag a few months ago about two parents of BPD adults saying they didn’t like the assumption that BPD is trauma-based because they didn’t abuse their children. Then someone with BPD responded that even the most ordinary parents make mistakes, and this can set off BPD in vulnerable people.

Let’s move away from black-or-white thinking in the nature/nurture debate. Let’s also move away from blaming ourselves when something is brain-based, or feeling more broken for it, and from blaming our parets when something cannot yet be shown to be brain-based. Therapy can change brain function. So can other environmental circumstances, like trauma. When we have a brain dysfunction, we may perceive experiences differently. The two basically interact.

I remember when the Dutch organization that oversees health insurance proposed to drop mental health coverage for people who’d gotten mentally ill as a result of life circumstances. Have we truly gone backwards that much, believing that the brain and mind are two entirely separate entities? Science shows that, with mild depression for example, it doesn’t matter whether it’s due to recent divorce or it comes out of the blue, a wait-and-see approach is always best. With severe depression, not so. And as for BPD, it’s usually severe enough to warrant treatment whether it’s brain-based or not.

Moving Beyond Blame in Abuse

A few days ago, Soaring Survivor wrote an interesting post on forgiving yourself in the process of healing from domestic violence. Forgiving yourself, she says, is harder than forgiving the abuser.

I always find myself thinking that my situation is almost unique, in that I myself was aggressive and my family responded with aggression to my behavior. Then I found out, I don’t remember where, that in most situations of intimate partner violence, there is not simply one person who is the perpetrator and the other who is the victim. Rather, there tend to be some form of abuse on both sides. I am not saying that this is the case for Soaring Survivor, as I don’t know her situation. What I mean to say is that my situation, involving sort of provoked aggression, is not as unique as I used to think.

This makes forgiving myself extra hard. I have forgiven my family, I think, but too often this comes down to trivializing what happened. I know that my parents weren’t sadists, and I often say this to justify their actions. They did what they thought was their best.

Then a few weeks ago I read a response in a women’s magazine from a person with borderline personality disorder to two parents who had complained about their children’s BPD being attributed to abuse. The borderline patient said that even very ordinary parents make mistakes, and this can set off BPD in vulnerable people. Does this mean they’re pitiful victims? No.

What I realize as I write this, is that maybe the hardest part of forgiving both yourself and the people who hurt you in your life, is shifting the focus away from the question of blame. Ordinary partners and parents (and children) act out violently, and accepting this is hard but necessary for both survivors/victims and the general public. Abuse happens, and the idea that only sadists perpetrate it, gets a whole lot of survivors/victims unnecessarily stuck in self-blame. Forgiveness may involve accepting what happened without letting it hold you back from living a fulfilling life. I’m still struggling with this.

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 fa├žade 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.

New Psychiatrist

I spoke to my new psychiatrist for the first time today. He was assigned to me because the old one is too busy and needed to decrease her caseload. At first I was pretty pissed that I’d been assigned a new psychiatrist without prior notice – I only found out when I asked my old one a question about medication. Then on Monday I heard from a nurse that the new one’s Dutch is pretty poor, so I was like: how in the world does someone who doesn’t speak a country’s primary language earn a doctorate?

Fortunately, the psychiatrist’s Dutch is better than I expected. He uses a lot of medical jargon and sometiems has trouble coming up with the right lay term. In that sense it’s good that I studied college-level psychology.

I can’t remember all that he said. My question was for a review of my PRN medication and maybe my antipsychotic. In the end, nothign was changed. He explained about the PRN meds that even with effective drugs, 50% of effectiveness is still placebo. That made it understandable that I don’t notice much effect even from the non-addictive promethazine (Phenergan) after a while. He asked which drugs I’d tried before, and I mentioned having been on most benzodiazepines. For a while, he contemplated prescribing a very low dose of Seroquel XR for sedation, but when I said I was already sleeping a lot, he decided against this. In the end, he advised against meds but recommended I exercise more, sleep less and get a better day-to-day structure. I’m not too sure this will work but it appeals to me. I am not too much in favor of tranquilization, especially since it’s usually the first thing a nurse will suggest when I’m irritable even when other strategies work better. Maybe I’d have had a different attitude had my experience with tranquilizers been positive.

Six Years

On Saturday, November 2, was the six-year anniversary of my mental health crisis. I haven’t really been remembering every detail of this crisis this year. What has been on my mind this year, is how it could’ve been interpreted so much differently had I had the diagnoses I have now. I mean, I made a suicidal threat in a public place. I didn’t know right then whether I was going to follow through, but knew that I wasn’t several hours later. Of course, those hours would’ve been enough for harm to have occurred had I been left alone, but even borderlines with suicidal ideation aren’t left alone if they’re in a public place. I don’t think the police would have left me alone had they known I had BPD – it’s not their job to do mental health triage, after all. The crisis team, on the other hand, would likely have sent me home. Instead, they knew I was autistic and diagnosed me with severe adjustment disorder, which together means they had a reason to hospitalize me.

It frustrates me sometimes how borderline personality disorder is so often viewed as attention-seeking by mental healht professionals (and the general public, but they can’t help it). A desperate cry for help is often interpreted as manipulation. I remember, long before my BPD diagnosis, reading a book on how the Dutch system deals with people who are a pain in the ass due to mental illness, delinquency, or a combination of these. In the book, a crisis team nurse was quoted as saying something like: “Those pesky borderlines, they frustrate me to no end.” This statement was made in response to a BPD patient who’d taken an overdose calling the crisis team to request hospitalization. Now I, too, could see how the demands this person made were excessive, but it’s not like a diagnosis of BPD means a person taking an overdose isn’t serious.

Last night, I was working on my crisis prevention plan with my named nurse. She asked whether I’d discussed my diagnosis with my therapist, in relation to the prevailing idea that borderlines need to be allowed to take responsibility for their own situation even in a crisis. She meant it kind of positively, as in the nurses not dictating what I should do in a crisis, but as an example, she said if I run off, should the staff just let me and not intervene until I make my way back to the ward? Hell, no! She got to using my blindness as an excuse, but I don’t feel this in any way changes the situation. I just can’t take full responsibility for all my actions, and, the worse I feel, the harder it is for me to communicate what I need. I’m working on developing more autonomy and signaling my emotional state before it escalates into crisis, but you can’t expect me to master this skill without having learned it. I’m pretty sure a lot of borderlines agree.

Pathological Demand Avoidance (PDA)

A few months ago, I became a member of some groups for pathological demand avoidance. Pathological demand avoidance (PDA) is a term coined by Elizabeth Newson from the UK for a set of symptoms that she claims are part of a distinct autism spectrum disorder. These symptoms include:

  • Obsessive resistance of everyday demands.
  • Appearing sociable on the surface but lacking deeper social understanding.
  • Excessive and sudden mood swings.
  • Language delay, possibly due to passiveness.
  • Obsessisve behavior, often focused on people rather than things.
  • Comfort (sometimes excessive) in role-play and pretending.

People with PDA are thought to have high anxiety and a need to be in control. This causes them to actively and/or passively resist demands placed on them by others.

I am not yet sure what I think of the existence of PDA. Is it yet another pathologization of annoying-but-normal behavior, or, worse yet, is it the new drapetomania? You know, the compulsive running-away of slaves? What I mean is, is it a healthy response to excessive authority? I was discussing something like this with my therapist last Thursday. I didn’t mention PDA – we’re treating my symptoms as part of borderline personality disorder -, but now that I think of it, I realize that the idea of PDA fits in neatly here. I have a seemingly compulsive need to resist expectations from others. Until I spoke about this to my therapist, I’ve always said this is a normal part of rebellion against the institutional system I’m in. Or is it? I resist attempts to give me responsibility for my own life, too, and earlier last week, realized I wasn’t sure I wanted to recover, out of fear of losing my support before I was ready.

Now I am not advocating labeling people with more diagnoses than they need. In my own case, it could well be that my problems are due to a combination of autistic overload, BPD-related identity confusion and having lived in situations where others determined my goals for much of my life. I am still unsure as to whether my therapist is not one of these authority figures, who wants independence only insofar as it isn’t defying her idea of who I am.

An important thing which Newson highlights in relation to PDA, is that ABA-style behavior modification does not work with PDA children (or presumabley adults). The therapeutic relationship is much more important than it is presumed to be in behavioral interventions. I like this, although I feel the therapeutic alliance is important for others with autism spectrum disorders too.

One thing I don’t like about Newson’s theory, is that she presumes PDA sufferers to be manipulative. Now I am not one to say that autistics can’t manipulate – they can and do -, but here comes the question again of where manipulativeness comes from: is it an innate PDA characteristic, or is it learned behavior in an attemt to manage a hard-to-cope-with environment? Newson assumes manipulation in PDA is not something the child chooses out of a will to be annoying, but out of a need for control and to avoid anxiety. Overload, of course, is often confused with anxiety, so in this sense I’m not too sure that I think.

Do Labels Matter?

Just a few minutes ago, I found a great post on Our Stroke of Luck about having a child newly diagnosed with autism and still realizign he’s him. I struggled with my comment in a way, because I didn’t want to say that autism doesn’t matter. It’s still a part of who an autistic person is. But it’s not all. As Owen’s mother writes in the post, he’s still adoerable.

I am sometimes told I overemphasize how different I am from other people. I am trying to lessen this habit, because, even though disabilities are a large part of me, they’re not all there is. I am also ssmart, have a cynical sense of humor, and am pretty strong-willed. I am a crafter, a blogger, a wife, an activist and a student. I know I’ve written about this before, but I keep struggling with this identity confusion thing.

One of the commenters on the post said that labels don’t matter, love does. I disagree with the first part of this sentence. Labels are what define us, they’re just not always negative labels or disabilities. All the qualities I listed above, are labels. Of course these labels make up a whole person, but it can be hard to see yourself or others as the whole person without using the labels that make up you or someone else.

I know what the commenter meant. A disability diagnosis doesn’t make the disability real (and no diagnosis doesn’t make it unreal). Especially if you were born with your disability or acquired it early in life, there’s no way of knowing what you would’ve been like without it. A diagnosis may be a relief, knowing that your or your child’s struggles are not due to laziness or all in your imagination. It may be depressing in the sense that this same reality – the diagnosis and accompanying prognosis – may shatter your dreams. It is an art to find the right balance between accepting and challenging your or your disabled child’s prognosis. Labels should matter, but not so much that they become a self-fulfilling prophecy.