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

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.

Emotional Development As It Relates to Intellectual and Developmental Disabilities #AtoZChallenge

Hello everyone. For my letter E post in the #AtoZChallenge on disability, I’d like to talk about emotional development. This is one of my pet peeves, as I myself am considered as having a very significant gap between my intellectual and my emotional level of functioning. For people with an intellectual disability, this is often the case too. In an ideal situation, regardless of developmental level, a person’s intellectual and emotional functioning are in sync. That way, after all, they can more or less be understood like you would a child of their developmental age. (I know that infantilizing disabled people is highly discriminatory, so it’s more complicated than that. For the purpose of this blog post though, I will not go into that. And, for the record, I personally find the concept quite useful for myself.)

The concept of emotional development in intellectual disability here in the Netherlands is most well-known from child psychiatrist Anton Došen. Došen wrote a book on working with developmental ages. He explained about intellectual and emotional development. People’s emotional development rarely surpasses their intellectual level.

In the book, he detailed either seven or five stages of child emotional development. I say possibly seven because a typically-developing child goes through seven stages, but intellectually disabled people aren’t presumed to reach an intellectual level beyond that comparable of a twelve-year-old child. For this reason, Došen postulates that the last two stages aren’t relevant to people with intellectual disabilities.

The stages are:


  1. adaptation phase: 0-6 months. Babies learn to adapt to the world outside of the womb. Babies will not yet explore the world around them, but will explore their own bodies. They will learn to adapt to temperature changes, sensory stimuli, etc. People stuck in this stage will usually show severe agitation when overstimulated, but they are not able to consciously direct this at other people or their environment. Disabled people stuck just in this stage are usually profoundly and multiply impaired, although people with severe mental illness or developmental disabilities such as autism may regress into this stage at times. I, for one, do.

  2. First socialization phase: 6-18 months. This is the stage in which a child (or disabled person stuck in this stage) will be focused primarily on the caretaker as an extension of themself. Secure attachment is of prime importance for children at this age and insecurely attached individuals might be stuck at this stage (again, me). Many individuals with less severe intellectual disabilities or even no intellectual disability at all, are emotionally at this level (like myself). They, like individuals stuck in the first stage, require individual support.

  3. First individuation phase: 18-36 months. During this stage, children learn that they are their own person separate from the caretaker. This can lead to conflicts related to their need for autonomy vs. their need for care. They, like children in the previous stage, experience separation anxiety. It is also common for individuals stuck at this stage, particularly more verbally capable ones like myself when I’m well, to engage in power struggles. Think of the “Terrible Twos”. Individuals who function at this level, will be able to cope with less one-on-one support.

  4. Identification phase: 3-7 years. During this phase, children learn to identify with important role models such as their caretakers and learn social rules and norms from them. Early on in this stage, children will still often feel tempted to do things that aren’t okay, but later on, they will learn to follow socially-accepted rules even when the caretaker isn’t present. Children or people who function at this level often come across as self-centered because they are unable to see things from another’s point of view. For this reason, they can (unintentionally) hurt each other. The ability to understand another’s viewpoint doesn’t develop until a child is about six-years-old. Individuals in this stage can be supported from a distance (in a group setting), but will need individual support when stressed.

  5. Sense of reality: 7-12 years. During this phase, children are usually in primary school, so contact with peers is more important than contact with caretakers. Children will learn to think logically and their distress tolerance will increase. Individuals in this stage need less support than those in the previous stages. It is more important to negotiate responsibilities with the client and to discuss conflict situations after they’ve occurred. I, honestly, cannot relate to anything within the description for this phase.


The next two phases are the second socialization and second individuation phase, which are usually only reached by typically-developing young people. I have not been able to find information on these stages yet.

The scale for emotional development used in the Netherlands for understanding people with intellectual and developmental disabilities, makes use of eight different domains of emotional development, on which a person can be scored differently. For instance, on the domain of body awareness, someone might score as functioning between 0-6 months, while in the area of handling material, that same person might be seen as functioning like someone between 7-12 years. Someone can also regress back into an earlier phase when under severe stress.

The Wednesday HodgePodge (October 12, 2022)

Hi all. I haven’t been around in a few days and am not too motivated to write. However, I don’t want to abandon this blog altogether, so I’m participating in the Wednesday HodgePodge for today. Here goes.

1. Thursday (Oct 13) is National Train Your Brain Day. What do you do to keep your brain in tip top shape? Is it helping?
Does reading and writing in English, which is my second language, count? Other than that, not very much. I used to love a word game called 7 Little Words, but it’s not as accessible now as it used to be.

Is it helping? I’m afraid not. I feel like I’ve been slowly deteriorating over the past fifteen years.

2. You can sit with anyone in the world and “pick their brain”…whom do you choose? Tell us why?
Anton Došen, a former professor of psychiatry of intellectual disability here in the Netherlands and the first one (if I’m correct) to describe the discrepancy between cognitive and emotional development.

3. What’s something happening in the world (or your corner of it) right now that you have trouble “wrapping your brain around”?
Too many things to count… Politics, the economy, the war in Ukraine, my staff’s expectations of me… God’s love… etc.

4. On a scale of 1-10 where do you fall in the pumpkin fanclub? (1=blech, 10=make it all pumpkin all the time) Tell us something delicious you’ve tasted recently that had some pumpkin in it somewhere.
Hmmm, I don’t really care for pumpkin that much, unless it’s mixed in with other vegetables in some kind of stew or something. I’ve never had pumpkin spiced anything either.

5. Share a favorite song, book, or movie with an autumn title, setting, or vibe.
I have absolutely no idea.

6. Insert your own random thought here.
I am struggling. For one thing, fall is the hardest season for me. For another, settling into my new home is really difficult. Thankfully, I’m getting to know my staff a little and trying to let them know how I feel. This is hard, as I don’t want to be seen as too demanding. I am pretty sure some staff see me as such anyway.

#WeekendCoffeeShare (July 2, 2022)

Hi everyone on this first Saturday of July. Wow, can you believe the first half of the year is over with already? I certainly can’t. I’m joining #WeekendCoffeeShare today. I just had my afternoon coffee, but the other residents are probably still having theirs. Let’s have a coffee and let’s catch up.

If we were having coffee, I’d start out by asking how you are. How’s your weather? Ours has been mixed. Right now, it’s about 23°C and partly cloudy, but we’ve had daytime temps as high as 29°C and as low as 19°C and a mix of sun and rain and thunderstorms.

If we were having coffee, I would share that this week was a mixed bag. I’ve been struggling quite a bit with all the new staff being introduced to me over the week. Now I hear you say what my staff have been saying too: isn’t that better than temp workers? Yes, it is and, thankfully, I didn’t have any temping staff all week. However, on some days, I had two staff introduced to me in a day and this generally meant at least one of them was orienting to my one-on-one shift. This means they’re with me literally all the time and this means I have two staff with me all the time, who are sometimes chatting among themselves about their kids or whatever (sometimes under the guise of the new staff telling me about themself). That cost me a lot of energy. By the middle of the week, I had thankfully been able to get it through to the staff that I don’t like this.

If we were having coffee, I would tell you that I’ve been struggling a bit with the discrepancy between my emotional development and my intelligence again. I have been reading up on emotional development as it relates to people with developmental disabilities and, though the theory makes perfect sense to me, this does actually create intense turmoil inside of me. This specifically relates to the situation in which staff confront me with my challenging behavior, trying to let me know it’s unacceptable. I am not even always rationally able to see their point, for example when it relates to the temp workers and new staff, but even when I am, it is sheer impossible for me to grasp it emotionally.

If we were having coffee, I would share that, on Monday, some evangelicals were handing out flowers near my neighborhood supermarket. As a progressive Christian, I agreed with a lot but not all of what the woman doing the evangelizing to me said, but I didn’t feel like challenging her. After she started challenging my staff’s Catholic beliefs and all of us noticed the conversation became awkward, I accepted the flowers and moved on. I do feel that this, odd as it may seem, came at the right time, being that it was my birthday and I’d just had a really hard appt with my nurse practitioner. At least yesterday, the flowers still looked quite good.

If we were having coffee, lastly I would tell you I’ve been very crafty lately. The creations I shared yesterday, I had finished late last week. This week, I’ve been experimenting with the plunger cutters I got from the new student staff on Wednesday, as well as with my extruder. I didn’t actually create anything using the extruder yet and I might’ve broken it already after all. Today, I did create a sort of Earth charm. I originally wanted to do the continents much like they are on the real planet, but that didn’t work out.

How have you been?

#WeekendCoffeeShare (April 2, 2022)

Hi everyone on this cold Saturday evening. I am joining #WeekendCoffeeShare today. I’m afraid I just have water or maybe the staff has put some soft drinks in the fridge by now. My favorite soft drink, Dubbelfrisss, wasn’t cold when I had my evening drink about an hour ago. Anyway, let’s have a chat.

If we were having coffee, I’d tell you that I finally have been crafting again today after a week of just watching crafty videos and doing nothing creative at all. That is, I’ve been blogging, which counts too, of course, but I haven’t touched my polymer clay or jewelry-making supplies or macrame cords or anything.

Today, I finally did a couple of pieces for the mobile for the baby my sister is expecting. I also finished the polymer clay hedgehog I’d started on about a month ago. At first, I was disappointed, because I’d used up all of a particular color for its body and now it was nowhere to be found, so I couldn’t do the ears in the same color. Turns out real hedgehogs also have slightly differently colored ears than their bodies. Besides, I never really meant to be doing a fully realistic sculpture anyway (I can’t).

If we were having coffee, I’d share that the rest of the week was quite meh. I’ve been having tons of plans in my head, but no ability to actually put them into action. Today, I also experienced a ton of flashbacks and internal chaos. Seriously, the discrepancy between my intellectual ability and my emotional immaturity is really getting at me. I find that I can intellectually think of a lot of things that emotionally I cannot handle at all. I’m not sure if this makes sense.

If we were having coffee, I’d tell you that I may want to research an autism support method by Colette de Bruin. My assigned home support staff pointed it out to me and said she’s pretty much using the method on me already, but I may benefit from learning about it myself.

If we were having coffee, I’d share that I am very happy with the latest iOS update. I finally was able to do some reading again on my iPhone yesterday, since the update fixed a bug that caused my Braille display to become pretty unresponsive. I usually read with just my Braille display, as I don’t like VoiceOver’s synthetic speech for that.

If we were having coffee, lastly I’d tell you that I have a quiet weekend, because my husband isn’t coming over and I have no other plans. Next week though is going to be busy, especially the weekend. I am going to the nationwide cerebral palsy day with my mother-in-law. I will be attending a workshop on aging with CP in the morning, which I am really looking forward to. In the afternoon, I’ll be attending a yoga class. I may not be able to write a coffee share post then, especially since I’m also supposed to stay up-to-date with the #AtoZChallenge. I’ll be certain to write about it though.

How have you been?

Why Do I Need One-on-One Support? #31Days2021 #Blogtober21

Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.

Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.

Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.

I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.

This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.

Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.

If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.

I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.

Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.

I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.

Fight for the Light #SoCS

SoCS Badge 2019-2020

Sigh
I fight
For the light
That’s out of sight

Those were the words that popped up into my mind when I read this week’s Stream of Consciousness Saturday prompt. I have absolutely no idea why these words popped up. I guess it’s something to do with the lingering effects of my crisis two weeks ago. I’m still kind of depressed.

However, there’s also some hope shining through in my words. Just because the light is out of sight, doesn’t mean I don’t fight to find it. I am blind, so anything is basically out of sight. Well, not literal light, since I have light perception, albeit only a little bit. Anything else, really, is out of sight for me.

I’ve been pondering object permanence recently. This is the ability to know that, if an object (or person) is out of sight, it is still in existence. This ability is usually acquired at around age eighteen months, so my niece should have it. I rationally do too. Emotionally though, not so much. Though I don’t literally feel that a person who has left my proximity, no longer exists, I usually half-joke that they might just as well be on the North Pole. I wonder whether this struggle with some level of object permanence, could be due to my blindness. I guess not though.

Basic Mistrust

I have been compelled to read up on emotional and psychosocial development. One theory is Erik Erikson’s theory, which states that, at each different stage in life (from infancy to old age), a particular conflict is present. In infancy and early toddlerhood, this conflict is basic trust vs. mistrust.

I initially thought that this stage corresponds pretty much to the first adaptation phase in attachment theory, which takes place between birth and age six months. When I checked it though, it includes this stage as well as the first socialization phase, age six to eighteen months. This may be one reason why I relate strongly to basic mistrust even though, in attachment theory terms, I function in most areas consistent with the first socialization phase.

One thing I’m facing lately is a chronic feeling of anxiety and distrust. In my care plan, my emotional development is outlined and in the fear domain, I am said to function at an age comparable to somewhere between zero and eighteen months. This includes all of Erikson’s first stage of psychosocial development. By contrast, it encompasses both the first adaptation and first socialization phase of attachment development. The reason my development in this area isn’t pinpointed to either of these two phases, is that I experience both basic fear (consistent with the first adaptation phase) and strong separation anxiety (consistent with the first socialization phase). Apparently, a baby under six months cannot yet express separation anxiety.

I have little idea why I might experience such strong anxiety, as in, what in my early development contributed to it. I mean, my parents claim I didn’t have these issues until I started to lose my eyesight at age seven. Seven is another important age in both cognitive and psychosocial development, but I don’t think that one is particularly important in my life. The earlier stages seem to make far more sense to me.

Of course, I do know that I probably didn’t have optimal care in my early life. This isn’t anyone’s fault. I was, after all, born prematurely and spent the first three months of my life in hospital. Though my parents visited me often, I don’t think I could rely upon them for meeting my every basic need. After all, they cannot possibly have been in my proximity 24/7, like the mother of a typically-developing child usually is at least for the first few weeks to months. My nurses must’ve provided me feeding and comfort at least part of the time.

As for affection, I have absolutely no idea. NICU nurses aren’t likely to be able to provide any significant level of affection to a baby at all, but I guess my parents would’ve made up for that. I went into this when discussing mother as source and mother as place of attachment. The truth is, I honestly mostly rely on my current feelings to guide my ideas. I, after all, don’t have many early memories of affection. My first memory related to it is from age four or five and it involves my mother using a nickname for me that referred to her needing to be at my side all the time. Then again, most people don’t have many early memories at all and remembering is still a form of reconstruction. In other words, because I experience a lot of basic mistrust now as an adult, it is easier for me to remember the memories that point to this.

This post was inspired by Fandango’s one-word challenge (#FOWC), the word for today being “Basic”.

Good Enough

Today’s optional prompt word for #LifeThisWeek is “Good”. Denyse takes on a cynical approach to the word, which reminds me of the many degrees of being called “good” I experienced.

In my elementary school years, my parents were in a constant fight with the schools for the blind I attended about my educational needs and my potential. According to the school, I was a good enough student. That’s the literal translation of the words that appeared on my report card often. Sometimes, when I was better than average, just “Good” appeared.
My parents thought I ought to get some more recognition. They thought I was excellent, sublime, a genius.

My schools thought I should be going to their secondary school program, which at the highest level catered to average students. My parents believed I could do far better.

I doubt, to be very honest, that my teachers truly didn’t see that academically, I was above-average. At least some of my teachers must have seen this. However, socially and emotionally, I was significantly behind. This was probably the real reason my schools recommended I continue in special education. My parents disagreed. They felt that I would be overprotected and underestimated in special ed. They might’ve been right. We’ll never know, since my parents took me from educational psychologist to educational psychologist until they had the recommendation for mainstream high level secondary education in their hands.

What I do know, is that I ended up being overestimated and underprotected. My parents would love to deny this and blame the staff in independence training for essentially setting me up for long-term care. Agree to disagree. Then again, we’ll never know, because I didn’t go into independent living and on to university right out of high school.

Sometimes, I wish I was just the average, good enough student that some of my teachers saw me as. Then at least I wouldn’t have to face the enormous challenge of both a high IQ and an emotional level comparable in many ways to an 18-month-old child. Then, I might not be writing blog posts in English, but I also might not need 24-hour care.

Then again, I enjoy writing blog posts. I like my care facility. Life is good enough for me.

Sweet Child O’ Mine: My Inner Child Parts #Blogtober20

Welcome to another day! The next prompt in #Blogtober20 is “Sweet Child O’ Mine”. I don’t have children and never will. However, I do have inner child parts and am pretty childlike at times, for better or for worse.

As regular readers of my blog will know, I have some dissociative symptoms. Particularly, I experience identity confusion and identity alteration. The latter of those is more commonly known as having multiple personalities. They each have their own names and ages too.

For example, Milou is a cheerful eight-year-old. She loves to learn independence skills like cooking, where appropriate to her age, of course. She is also quite the adventurer.

Suzanne, on the other hand, is quite emotionally disturbed. She is seven-years-old and feels the burden of having to grow up too fast. She often regresses into an emotionally much younger state.

There are many young parts inside of my head. It goes too far to talk about them all here. I mean, it’d probably confuse all of you, as it does me sometimes (hence the identity confusion).

Also, of late, I’m not feeling them that much. Yes, I do feel childlike, but it’s more like I can own the feelings myself. That’s considered a sign of healing. It might be temporary though, as it often is.

Dissociative symptoms such as multiple personality are usually the result of trauma. I, indeed, endured quite a few adverse childhood experiences. I also experience a large gap between my intellectual ability and my emotional functioning. In fact, when being assessed on a scale for emotional development, I was said to function at a level similar to an eighteen-month-old child. On some subscales, I even function at a level similar to a baby. This distinction may be one reason I tend to disconnect from myself.

Of course, everyone has an inner child. Or maybe more than one. However, for me, I often cannot function like an adult would when I’m in inner child mode. For example, when a child part is prominently present in my body, I cannot usually talk like an adult would.

Right now, like I said, I am able to retain both my childlike wonder and my adult functioning for the most part. Like I said though, this may be a temporary experience. I’m not sure and only time will tell.

#Blogtober20