Some Might Say It’s Wrong to Be Angry

Posted on by Astrid

Some might say it’s wrong to be angry. I was actually told when I was in fourth grade that I was “angry too quickly”. What my parents and the professionals meant is that my expression of my emotions, whether I was actually feeling angry or not, was wrong given the situation.

That’s not the same. An emotional expression isn’t the same as the emotion that someone is actually feeling.

Besides, I strongly disagree with the idea that emotions can be “right” or “wrong” even given the circumstances. I have always felt that the idea behind dialectical behavior therapy of deciphering whether an emotion you’re feeling is justified in that situation or not, and, if not, acting opposite, is incredibly invalidating.

It’s never wrong to feel angry. Or sad. Or happy for that matter. Yes, it can be wrong to express your emotions in a certain way, such as when you become disproportionately aggressive. Even then, your emotions aren’t wrong. And, at least in my case, the emotion I’m actually feeling isn’t usually anger.

Like, when, last week, I became physically aggressive towards a staff by trying to hit him, I wasn’t angry. I was panicking because the staff was restraining me for the relatively minor offense of trying to grab a small object that he thought I was going to throw to the ground. That assumption may’ve been correct, but that doesn’t mean my feeling of utter panic when grabbed by both arms, was wrong. For what it’s worth, I feel that restraining someone for fear of them damaging an easily replacable object, is out of proportion.

It’s easy to say that people are wrong for being angry, when in reality you can’t know what’s in their minds, so whether they actually feel anger at all. It’s also easy to think that a person trying to throw objects is disturbing the peace for the other people around so you, as a staff member, are justified to do whatever it takes to prevent them. However, just because it’s easy doesn’t mean it’s right.

I’m sharing this post with Missy’s MAD Challenge for this week. The prompt is the phrase “Some might say it’s wrong to…”.

Sounds of the Intensive Support Home

Posted on by Astrid

Hi everyone. This week, one of Mama Kat’s writing prompts is to listen to the sounds in your house for five or ten minutes and let them inspire a blog post. I honestly don’t need to do this right now – I have my AirPods in my ears and their noise canceling is pretty good. Instead, since most sounds here are the same most days, I’ll write about the sounds I usually hear.

There’s this fan in my room. I have no idea what it does, but when they test the smoke alarm or when the smoke alarm goes off for another reason, it makes a deafening noise. Even when the smoke alarm doesn’t go off, the noise is a constant hum. When I came to look around here to see if I might want to live here, I thought I’d get used to it and, indeed, this is the least annoying of the daily noises, because it’s constant and monotonous.

Today, like most days, the resident who has his room next to mine was screaming and kicking his door non-stop for most of the day too. This is an intensely triggering sound, even though when the resident is this irritable he usually gets locked into his room. In fact, it triggers me, not just because I’m scared of his aggression, but also because I feel pity for him being locked into his room.

Then when I’m really lucky (not!), the resident two doors away from him has an outburst too and is being locked into her room as well. I am lucky (although truthfully I shouldn’t have to say that) that the threat of locking me up has only been used once. And I am really thankful the behavior specialist hasn’t approved locking me up or that threat might’ve been followed through on.

Then, if my window is open, or sometimes even when it’s not, I can usually hear the music the resident two doors from me on the other side listens to. He has been listening to St. Nicholas music lately, even though that celebration isn’t until December 5.

Then there are the various hallway noises. Sometimes I can hear another resident laughing or grumbling. At other times, I hear the staff fooling around. I can also hear one resident’s pet parakeet if it’s really quiet otherwise. That is a sound I cherish.

As you can tell, I mostly don’t like the sounds I hear here. Then again, I don’t like most of the things about the intensive support care home (my current care home). I hope at least some things will be better once I move to my new home this coming Monday.

Mama’s Losin’ It

Self-Injurious, Aggressive and Otherwise Challenging Behavior in People With Intellectual or Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter S post in the #AtoZChallenge. Today, I want to talk about self-harming, aggression and other challenging behavior in people with intellectual and developmental disabilities.

Some people erroneously believe that challenging behavior is an intrinsic part of being intellectually disabled. It isn’t. Neither are self-injurious or aggressive behaviors an intrinsic part of autism. These behaviors, however, do happen more often among people with intellectual and developmental disabilities than among non-disabled people.

The causes and reinforcing factors of challenging behavior are often complex. And though I mention them in one sentence, no, a reinforcing factor is not the same as a cause. Furthermore, if removing a reinforcing factor seems effective at reducing or eliminating the undesired behavior, this does not mean the problem is all solved. After all, especially people with intellectual and developmental disabilities who are at a lower emotional level of development or who struggle with communication are at risk of suffering in silence.

It may be tempting to presume motivators behind challenging behavior that are commonly believed to apply to typically-developing young children, such as attention or “getting their way”. Presuming these motivators, even correctly, is not taking into account the fact that people with intellectual and developmental disabilities are firstly not (necessarily) young children. Secondly, you need to realize that, like all people, they have a need for autonomy and attention and many, especially those living in institutions, are heavily lacking in both.

There are, of course, many other contributing factors to challenging behavior. For example, physical discomfort or pain may be a factor for some, especially those with profound intellectual or multiple disabilities. Others may have experienced trauma and struggle with attachment. I for one have relatively mild attachment issues (at least as apparent in my behavior) compared to some of my fellow clients, hence why I always get stuck with the temp workers. This of late has been causing me a lot of distress and has led to significant challenging behavior, which unfortunately for me isn’t significant enough to warrant any changes. Then again, if it did, those changes might well constitute restrictive measures.

Autism and Aggression: An Autistic Adult’s Perspective

Posted on by Astrid

April was Autism Awareness Month. In previous years, I have dedicated my #AtoZChallenge to autism, but this year, I chose a different topic. For a while, I had it in mind to focus on developmental disabilities in general, but, as you can see, I chose another topic entirely. However, the topic of autism is still on my mind. In the coming weeks, I want to offer more of an insider’s perspective on autism and its characteristics. After all, I am autistic and I feel that the blog coverage on autism is heavily divided between parents of autistic children sharing their stories and adult autistics sharing advocacy. Now there’s nothing wrong with advocacy – I feel passionate about it too -, but there is also nothing wrong with personal experience stories. What is wrong is when these are mostly one-sidedly coming from neurotypical (non-autistic) parents of autistic children. Hence, my insider’s perspective.

For my first post, I am choosing a rather controversial topic: aggression. When parents talk about their child with autism, one of the first things they will usually mention is the child’s aggressive behavior. And in fact, this was the first thing my parents would say when asked to describe my problem behaviors too. It was also what got me to be referred to the mental health agency for an evaluation at age 20, which ultimately led to my autism diagnosis.

I don’t know about statistics of aggression in general, but it is highly stereotypical to equate autism with violent behavior. Autistics are not more likely to be deliberately violent than neurotypicals and they are, in fact, more likely to fall victim to violent crimes.

That doesn’t mean aggression doesn’t occur and, when it does, that it isn’t related to the autistic person’s autism. To say that it’s a “comorbidity” is, in my opinion, doing the autistic a disservice. It is, however, an issue that arises in the interaction between the autistic person and a highly autism-unfriendly world. After all, at least I have often gotten aggressive when my needs for autism-supportive care are not met.

For instance, one day in the psych hospital, a nurse, whom I will call Sara, had said one evening that she’d get back to me the following day after morning report to talk about getting me unsupervised off-ward privileges. The next day, I went up to Sara, but wasn’t able to communicate clearly what I wanted. “I’m not your assigned nurse today,” Sara said. “Go to Daisy if you want something.” Now the nurse I’ll call Daisy was a temp worker, so clueless about my needs or what I’d talked to Sara about the previous day. I got very irritable, because Sara had promised me she’d get back to me and now she was referring me to Daisy. I screamed, walked around the ward restlessly and constantly nagged the staff in an irritable voice. By handover, a third nurse, whom I’ll call Robert, came on and said that he’d put me in seclusion if I didn’t calm down right away. “Go on then, stupid,” I shouted. So he did.

This was not my worst incident of aggression ever. As a teen, my mother reports, I would hit her. I currently still occasionally slap or push staff. Usually, this again results from staff not following through on something or not following my daily routine.

I feel strongly that, though not all incidents of aggression can be prevented by parents or carers providing autism-sensitive support, a lot of them can. If an autistic is aggressive anyway, there are much better ways of handling it than solitary confinement.

loopyloulaura

Also linking up with #PoCoLo.

Flash Fiction: Can I Go?

Posted on by Astrid

“I just want to go to a friend for two nights,” Patricia yelled, asserting her words with some colorful language, as she grabbed the nearest chair she could reach. “You are NOT going to treat me this way,” nurse Nancy replied with more anger in her voice than she probably intended. More calmly, she added: “If you want to go on leave for longer than originally agreed upon, you need to discuss it with Marjorie, and she’s not available right now.” At that point, a blonde nurse in her mid-thirties entered the ward. As Patricia saw her, her anger rose and, heaving the chair off the floor, she threw it at Marjorie, barely missing her. Turning to the nurse’s station, Nancy told Patricia, not even looking at her: “Here are your meds and the address for the homeless shelter; for your severe aggressive behavior, you’ve been suspended until Monday.”

This piece of flash fiction is based on a true story from a fellow patient at the locked psychiatric unit back in 2008. I always felt rather conflicted about patients, especially those without a home, being suspended for severe challenging behavior. In this case though, the patient got exactly what she wanted.

I am joining the Six Sentence Story Link-Up, for which the prompt this week is “Shelter”. I am also linking up with Friday Writings, even though it’s Saturday. The optional prompt is conversations you’ve overheard. Though I didn’t exactly overhear this conversation, as it was told to me by the fellow patient later on, I thought it’d be fitting enough.

The Shifting Image of My Care

Posted on by Astrid

In September of 2006, when I was still blogging on DiaryLand, I wrote an entry about seeing my life in black and white. I meant not just my life in general, but my care needs in particular. I wrote said post in response to a meeting I’d had with a psychologist several weeks earlier because my behavior at the training home I lived in at the time was spiraling out of control. The psychologist asked me where I saw myself in three years’ time, referring to care needs.

In my response on my blog, I said that I constantly had two images in my mind about what my life would be like, one positive and one negative. These were represented by the two most important alter personalities I had at the time, Carol and Jane.

Jane was fiercely independent. She wanted to live completely on her own without any support, except for maybe a weekly visit from a person to read her mail and the occasional help with deep cleaning.

Carol, on the other hand, saw herself as needing more support. I, at the time, made a point of clarifying that my “negative” image didn’t mean I needed 24-hour care, but that I needed significant help beyond that considered “normal” for someone who’s just blind.

Six months later, I had already discovered that the positive image wasn’t going to come true, yet I shifted my two images. I started to believe that the “good” outcome would be the situation I would live in at my student apartment, which included sixteen hours of support a week. The “bad” image, then, became needing 24-hour care.

You all probably know that the “bad” image eventually came to be true. When I wrote about the 2006 post on my original WordPress blog in 2009, I said that the situation couldn’t get much worse than it had been already at the locked unit. If another three years later, it was worse, I reckoned that’d mean I was in prison or a homeless shelter and hence wouldn’t have access to the Internet.

It didn’t get worse, of course, right? Or did it? I mean, I lived with my husband for some years, but eventually got admitted into long-term care. I now have one-on-one support most of the day. And yet the images are still there.

Jane is still saying I should live independently. Not with my husband, mind you, but fully on my own. Then at least I can’t manipulate people into giving me more and more care and, by extension, cannot drive people away.

There’s another image haunting me. This image wasn’t in my mind back in 2006, or at least I wasn’t aware of it. It is the image of a girl, aged around sixteen, who was a patient in a psychiatric hospital in the late 1990s, where she had been restrained for weeks on end until her parents sought media attention. This is the true worst-case scenario I see in my mind now. But the worst part isn’t the restraints: it’s the fact that the girl was often left completely alone.

I had a few incidents of physical aggression towards staff recently. The staff keep reminding me that they realize that I don’t mean to be aggressive and that they won’t leave me if I am. I hope the worst-image alter, whom I call Rachelle, won’t prove them wrong.

If The Staff Saw My True Nature…: Reflections on Not Belonging

Posted on by Astrid

Yesterday, I was in yet another crisis. I was majorly triggered when a staff told me at the dinner table to calm down or go to my room because she had other clients to attend to as well. This triggered both my fight and flight responses. I was completely convinced that this one remark proved that, if staff truly know me, they’ll abandon me. After all, if they truly knew my nature, they’d know I needed more support than they can offer. I was and still am intensely ashamed of this nature of mine, but for whatever reason, I cannot seem to change it.

I cannot stop this part of mine who thinks she needs almost literally one-on-one support all day. It isn’t even a sense of entitlement, since I don’t feel that I’m somehow deserving of more attention than the other clients. Or maybe at the core I do believe this. I’m not sure. My parents would say I do believe I’m somehow entitled to endless attention.

At one point, I lashed out at the staff member. This led to further intense shame. I was convinced that, in that moment, the staff had seen my true nature and that she was going to make sure I’d be kicked out.

For whatever reason, she didn’t. She did, I assume, write an incident report. Other than that, I must say she was incredibly nice all evening.

And yet all day I was convinced that, if the staff nor the manager were going to kick me out, they must not have seen how wicked I really am. I do know that, in truth, this was one of my worst outbursts of aggression ever. I’ve done more harmful things, but those were harmful only to myself.

The manager came to talk to me late in the afternoon. She reassured me that I won’t be kicked out. I tried to tell her that, despite my desire to be good, I feel I might need more support than my current home can provide. I wasn’t trying to elicit her pity or convince her to apply for more funding for me, but I was trying to make it clear that I may be more of a burden than she can handle. I don’t want to feel attached to the staff and the home and even some of the other clients only to be told in a month or two that after all I’m too much of a handful. The manager sort of reassured me.

And yet, when she was gone, I went online and looked at other places I might be able to move to. Not because I really want to move, but because that’s what I’m used to. I’m used to not being wanted anywhere. And it’s tempting to believe that, with how often I end up in crisis here, I don’t really want to live here myself. Ugh, I don’t know how to answer that question.