Down Syndrome #AtoZChallenge

Posted on by Astrid

Hi everyone. I am once again late writing my contribution to the #AtoZChallenge, but it’s still Wednesday in my neck of the woods. For my letter D post, I want to talk about Down Syndrome. When I first heard about it, I had many misconceptions about it. I saw it as the standard form of intellectual disability and only knew people with relatively mild intellectual disabilities who had this condition. Let me set the facts straight.

First, there are three different types of Down Syndrome. About 95% of those affected have what most know as classic Down Syndrome, ie. trisomy 21. Another 3% of affected individuals have Down Syndrome due to a translocated extra chromosome 21. This means that their extra chromosome (or part of it) is attached to another chromosome. I remember first learning about translocations in a play about bioethics in high school we had to watch for philosophy. The third type is mosaicism, in which a person has three copies of chromosome 21 in some but not all of their cells. These people might have milder symptoms than those with the other two types.

That being said, according to the American CDC, most people with Down Syndrome will have a mild to moderate intellectual disability. This may be so, but in reality, Down Syndrome individuals span the full gamut of intelligence, from near-average to profoundly intellectually disabled. It is impossible to predict the severity of an individual’s disability at birth (let alone prenatally, should the expecting mother decide to test for trisomy 21). However, like I said yesterday, even if someone turns out profoundly disabled, it doesn’t mean they can’t express themselves.

At my old care home, there were four clients with Down Syndrome, three of them nonspeaking and thought to be profoundly intellectually disabled. At least one of them had additional health problems common in Down Syndrome. These health problems include congenital heart defects (which this woman had), hearing loss and ear infections, an increased risk of obesity, and obstructive sleep apnea.

The life expectancy of people with Down Syndrome has increased significantly over the years. Currently, many people with the condition live to age sixty. The client with Down Syndrome at my old care home who can speak, will be fifty in August. He does have some issues, so please all send out positive vibes that he’ll still be well enough, as I’ve more or less promised him and the staff that I’ll visit for his birthday.

Communication Issues in People With an Intellectual Disability #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m late today with my letter C post in the #AtoZChallenge. Today’s topic is communication issues facing individuals with an intellectual disability.

Intellectual disabilities can be described as mild, moderate, severe or profound depending on IQ or perceived level of functioning. As a result of this, but also due to other factors such as co-occurring autism, individuals with an intellectual disability vary in their ability to communicate in the same way non-disabled people do. Those with a mild intellectual disability are often able to speak and even read. In fact, I was surprised when I came here to my current care home to find out that several of my fellow clients can read quite well. Those with more severe intellectual disabilities, may use other methods of communication.

In general, communication methods can be divided into three categories: pre-symbolic, symbolic and verbal.

Pre-symbolic communication involves the type of communication that precedes symbols such as pictures or signs. It includes vocalizations, body language, and facial expressions. Individuals with profound intellectual disabilities often use this method of communication exclusively. It might be tempting to think that people who cannot use symbolic communication, cannot make their wants known. However, I remember at my first day center with my current care agency meeting a woman who was clearly at this level, but the staff knew what her favorite essential oil was.

Symbolic communication involves pictures and photos. Please note that some people may be able to use just a few familiar ones, while others’ abilities are broader. However, you will never know what a person is truly capable of until you get to know them.

Verbal communication involves speech and sign language. Most people with an intellectual disability have a mild impairment, so will be able to express themselves verbally. That being said, you still need to check whether they truly understand what you were saying. For example, some people with an intellectual disability will have very concrete, literal reasoning.

People with an intellectual disability often do not do well with closed questions, because they will answer what they think the other person wants to hear. As a side note, so do I! However, too open-ended questions are not useful either, as they require the person to retrieve a lot of information. This, again, goes for me too. Either/or questions may be helpful with some, although I’ve seen people with severe intellectual disability usually pick the last out of the options.

It is usually recommended to use short, simple sentences with everyday words (no jargon). People should be even more aware of the individual’s body language than when communicating with people who don’t have an intellectual disability. I want to say this goes for interactions with people with mild intellectual disabilities too. I mean, it is common sense to workers in care homes for individuals with profound intellectual or multiple disabilities to pay attention to minor changes in a person’s expression. However, here at my current care home staff often say that residents lash out for no reason at all. I doubt this is true.

Brain Injury As It Relates to Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. We’ve arrived at my letter B post in the #AtoZChallenge. I struggled with what topic to choose for this letter, but eventually settled on brain injury. As you will find out, this type of disability has a kind of controversial relationship to intellectual and developmental disabilities. After all, many people view an intellectual or developmental disability as necessarily present from birth. The American Association on Intellectual and Developmental Disabilities (AAIDD), however, considers an intellectual disability as having originated before the age of 22. In the Netherlands, the age of onset cut-of for an intellectual disability care profile in the Long-Term Care Act is 18. As such, people who acquired a brain injury in childhood affecting their ability to learn, are diagnosable as having an intellectual disability.

With respect to other developmental disabilities, such as autism, the diagnostic waters get even muddier. I, for one, was diagnosed as autistic at age 20 despite having suffered a brain bleed as an infant. Then, ten years later, the diagnosis was removed again because apparently a brain injury no matter how early on precludes an autism diagnosis. However, I could not be diagnosed with acquired brain injury-related neuropsychological or behavioral difficulties either, because these would have required a clear before/after difference. Besides, I am blind too, so most neuropsychological testing isn’t possible on me. As a result of this, I ended up with just a regular personality disorder diagnosis. Now I’m not 100% sure I don’t have a personality disorder, but it’s certainly not all there is to me diagnostically.

In the Dutch care system, people with acquired/traumatic brain injury usually fall under physical disability service providers, unless they have really severe challenging behavior. In that case, they usually either end up in an intellectual disability facility or a psychiatric hospital. There are a few specialist mental health units for people with brain injury, but these are treatment-based, not living facilities. There are also nursing home units for people with brain injury, but these cater towards people over 65.

Adaptive Behavior in Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to day one in the #AtoZChallenge. This year, I chose intellectual and developmental disabilities as my theme. One of the defining characteristics of intellectual disability, and also a common trait of other developmental disabilities, is impaired adaptive behavior. For my letter A post, I want to talk about that.

So what is adaptive behavior? Adaptive behavior refers to the skills we learn in life in order to adapt to the expectations of the world around us. It includes the following:


  • Conceptual skills, such as literacy, self-directedness and the ability to comprehend money, numbers and time.

  • Social skills, such as interpersonal skills, self-esteem, skills necessary to obey rules and the law and avoid being victimized.

  • Practical skills, such as personal care, travel, money management, housekeeping, etc.


Adaptive behavior is sometimes also called adaptive functioning. The skills that it includes are often referred to as “life skills”. Adaptive behavior is important, because it allows an individual to adjust to the changing demands of life. It is related to intelligence, but it’s not the same.

In order to be diagnosed with an intellectual disability, in addition to a significantly below-average IQ (which I will talk about in my letter I post), a person must be significantly impaired in their adaptive functioning. However, impairments in adaptive behavior are not exclusive to individuals with an intellectual disability. People with other neurodevelopmental disabilities, such as autism, often show impairments in this area too. I, for one, do.

“You’ll See Someone At Some Point.”: Autism and Day Schedules

Posted on by Astrid

I have been thinking a lot about my day schedule lately. It’s okay. Not good. Far from perfect. My assigned staff gets slightly annoyed when I point out it’s far from perfect. She thinks – and I honestly can’t blame her – that it wouldn’t be perfect until I got one-on-one 24/7. I at one point actually told my staff so (well, not exactly 24/7) – which is why I can’t blame them for thinking this. It’s not true though. I need time to sleep, to blog, to read and just to be by myself. I would indeed go crazy if I had someone in my room around the clock.

In fact, when I was talking to my home’s behavior specialist on Tuesday, I told her I could do with longer periods of alone time than the 30 minutes at a time I have now. That is, if staff stuck to the, say, 45 minutes we agreed upon. In fact, I’d love that, as 30 minutes isn’t enough to do any sort of longer meaningful activity alone, like blogging. By extending my alone times from 30 to 45 minutes (or occasionally longer), I could then lessen the number of them and by extension have longer times of supported activity, so that I could actually do something like do a bigger clay project.

This, obviously, isn’t possible at this home. Not only because staff need to leave my room at least every hour for one thing or another, but also because they need to switch as often too, sometimes without warning.

This is where I get really annoyed. I mean, I know that most pro-neurodiversity autistics despise day schedules, but mostly (I assume) because they are imposed upon them in behavioral settings etc. I actually thrive on a day schedule, but it has to be followed. I personally don’t mind Colette de Bruin’s system of What, Where, When, With Whom and What after that, as long as I have a say in the contents of my day schedule.

In my case, the “Where” is usually clear, although it does happen sometimes that I get taken into the communal room without having been given a choice, because “it’s fun”. The “When”, not so much. I do have times on my day schedule, but these are “approximates”. A few days ago, when we didn’t have dinner until six o’clock, whereas the regular time is five, this “approximate” was used against me. I don’t call that approximate.

The “With Whom” isn’t clear at all. Staff don’t tell us clients who will be working the next day or even late shift when it’s still morning, because someone might get sick. This isn’t the worst though: there are four staff in the home for each shift and they switch about randomly. I call that chaos for chaos’ sake.

Today, I called out a staff on the website’s info about the home, which claims the staff know autism. “We do know autism,” she said. Well, if she did, she wouldn’t be constantly telling me: “You’ll see someone at some point,” when leaving my room for my “time by myself”.

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.

Benzos As a “Bandaid” for Serious Mental Illness: My Experiences

Posted on by Astrid

Earlier today, Ashley of Mental Health @ Home wrote an interesting article about the role of benzodiazepines in mental health treatment. While benzos can be useful as short-term treatment or PRN medication for panic disorder, generalized anxiety disorder, social anxiety or insomnia, they are often used as a go-to “bandaid” med for all kinds of mental health conditions. And by “bandaid”, I don’t just mean short-term.

The first benzodiazepine I was prescribed, was the sleeping pill temazepam (Restoril) by my GP in 2006. I was suffering with significant insomnia, but really I was suffering with what I now know is a combination of the onset of autistic burnout and my dissociative shell cracking, if that makes sense. I was given ten pills to use over the course of a month at least. I took six weeks to use them up and refused to get a refill even though my staff at the independence training home nagged me about it.

Then, once in the psychiatric hospital a year later, I used a number of different benzos, one after the other, mostly for sleep too. I however also got put on oxazepam (Serax) as a PRN medication for my agitation. Whenever I took it, I’d become hazy, fall asleep for an hour or so and wake up just as agitated as I was before or more so.

At the time though, I was seen as just autistic if that at all. More so, I was seen as a manipulative, challenging pain in the neck of the nursing staff. It hadn’t been come to the surface yet that I was a trauma survivor and, if it had, no-one cared.

Benzos can cause dissociation to worsen in people with dissociative disorders. Indeed, I find that I do become more fuzzy and I really don’t like it. Benzos can also cause people with borderline personality disorder to become more irritable or impulsive. While I personally haven’t noticed I become particularly aggressive on benzos, like I mentioned above, after the first effects wear off, I do notice I become at least as irritable as I was before taking the medication. I used to attribute this to the fact that the reason for my agitation wasn’t solved by my taking a pill.

After all, one thing that Ashley doesn’t cover is the fact that people with severe mental illness who get prescribed benzos as bandaids for agitation, may very well have good reason to be agitated. I found that often the nursing staff in the mental hospital weren’t following my care plan or my crisis prevention plan at all and, when I got irritable as a result, I was quickly directed to take my Serax.

All this took place in 2007 or 2008, before I was diagnosed with DID or PTSD or BPD for that matter. Once diagnosed with these, I still ended up with a prescription for lorazepam (Ativan) though. In fact, I at one point took it at a relatively high dose of 3mg per day for several months. Thankfully, my withdrawal symptoms once quitting cold turkey due to a miscommunication with my psychiatrist, were physical only and I was able to go back on it and taper slowly soon enough.

Currently, I do have a prescription for lorazepam as a tranquilizer for when I have a dental procedure. Now that I am thinking about all the things I read in Ashley’s article, as well as what I’ve been discussing with my psychiatrist recently about my fear of losing control, I’m not even sure I’m going to take the medication when the time comes to have dental work done. Which, I hope, isn’t anytime soon.

Life Skills I Struggle With As a Multiply-Disabled Person

Posted on by Astrid

Earlier today, Ann Hickman wrote an interesting list of ten life skills she is teaching her autistic teenager. As a teen, I missed out on most of these lessons she mentioned, leading to a big gap in my skills as well as my awareness of them.

Of course, lack of education isn’t the only reason autistics and otherwise disabled people may struggle with life skills. I struggle with many of them due to lack of energy, executive functioning issues and other things.

Today, I am sharing life skills I struggle with and why.

1. Personal hygiene. I remember vividly my sister gave me a deodorant for my fourteenth birthday as a hint. I didn’t get it. I wasn’t taught about hygiene much beyond childhood, but even if I were, I didn’t grasp the concept.

Similarly, because we had a bath at my parents’ house, I didn’t learn to properly shower. I didn’t know until a few years back that you’re supposed to use body wash when showering each time.

Other personal care tasks, I simply cannot do due to my physical limitations. I cannot clip my nails, for instance. I know some other blind people (presumably without physical disabilities) can, but other blind people I know go to the pedicurist for this.

2. Meal preparation. While in the training home, I tried for weeks to learn to put peanut butter or jelly on my bread without success. My mother can’t do it blindfolded either. My father can, but he assembles all his supplies around him in a very structured manner.

To be honest, I never had to prepare my breakfast or lunch before going into the training home, as we didn’t eat breakfast at my parents’ home and my lunch was always packaged by my mother (or I’d eat a sausage roll at the cafeteria).

There are probably ways I could prepare my own meals if I really need to. I mean, when living on my own, I just ate plain bread without toppings. However, I prefer my staff prepare it for me.

3. Cleaning. This is a difficult task for most blind people, but it can be done. I can dust my desk and table with minimal help if I’m reminded to do so. However, I can’t vacuum or mop the floors. I learned both, but with each house having a different way it’s set up, it’s very hard to find my way around it with a mop or vacuum cleaner.

What I struggle with most with respect to cleaning, is remembering how often each task needs to be done and actually organizing them. For example, in the training home, I’d clean the top of the doors each week despite no-one ever touching them. On the other hand, I’d procrastinate about changing my bed sheets, sometimes leaving them on for months.

4. Getting around. Ann mentions navigation for a reason: regardless of high-tech solutions to help people navigate, they still need to learn to use maps or to use public transportation. For me as a blind person, mobility was always more important, as it additionally involved safe white cane travel. I never mastered this, even with seven years of mobility training in special education and many more lessons once out of special ed. I only recently learned that more blind, neurodivergent people struggle with white cane usage.

Currently, I can for the most part move around inside the care home by myself, but I cannot at all get around outside without a sighted guide. My parents used to blame this on lack of motivation. While I am pretty sure this, as well as anxiety, does play a part, it is also about other things. Besides, lack of motivation is not the same as laziness. In my case, it feels as though the activity of independent travel overloads me cognitively to the point where I feel incapacitated.

I am assuming Ann’s son is “just” autistic, whereas I am multiply-disabled: autistic, blind and mildly physically impaired. However, with this article, I want to make it clear that there are many reasons a disabled teen or young adult might struggle with life skills and, for this reason, many different approaches to supporting them.

Keep Calm and Carry On Linking Sunday
loopyloulaura

Living With Sleep Disturbances

Posted on by Astrid

On Monday, I wrote about my relationship with the night. Today, I saw that the topic for Tale Weaver this week is sleep. I thought I’d use this opportunity to expand on Monday’s post a little and write about my various sleep issues. After all, being a night owl is one thing. Experiencing significant sleep disturbances is quite another.

First, there is of course plain old insomnia. I talked about this on Monday mostly. For as long as I can remember, I’ve had a lot of trouble falling asleep. Once I was asleep, staying asleep usually wasn’t that hard, except during times of significantly elevated stress.

Then there was the opposite. I honestly don’t think I ever truly suffered with hypersomnia, but there were definitely times I slept far more than I should have. These were often times of low stimulation. IN other words, I was bored to the point of sleeping.

Then there are these sleep disturbances that I cannot really classify and, since I haven’t been to a doctor with them at this point, neither can anyone else. I get really weird half-awakening states where it feels as if I’m doing something for which I should clearly be awake, only to realize later on that I wasn’t doing anything at all and was just half-awake thinking of doing something. With this come weird sensations, almost like hallucinations, too. These half-awakenings currently are very scary. I’ve heard they might be a sign of sleep paralysis, but I don’t think I experience the actual inability to move upon waking up that comes with it.

Then there are nightmares. I don’t get your standard child’s monster-under-your-bed nightmares. Neither do I get violent nightmares usually. In this sense, my nightmares don’t fit the criterion for PTSD. Then again, probably neither does most of my trauma, as most of it was mental and emotional abuse. Rather, I get nightmares that relate to my anxieties, such as of being kicked out of the care facility.

With these half-awakenings and my nightmares, it’s no wonder that sleep often invades my day-time life and vice versa. I find that nightmares often seem to go after me during the day and half-awakenings scare me too. This in turn contributes to a fear of going to sleep, which contributes to insomnia.

One sleep disorder I need to mention here, which I thankfully don’t have, is non-24-hour circadian rhythm disorder. This is common in totally blind individuals and occurs because our natural biological clocks seem not to co-occur with exactly the 24-hour clock of a day. This is corrected in people with some vision by the perception of light and dark, which regulates melatonin production. I have hardly any light perception left, but thankfully my sleep-wake cycle does not seem to be affected as of yet.

What It Was Like Being a Patient on a Psychiatric Ward #31Days2021 #Blogtober21

Posted on by Astrid

I’m still not too inspired to write. Today’s optional prompt for #31Days2021 is “patient”. Obviously, most people will write about “patient” as in the adjective derived from patience. I won’t. I want instead to share what it was like being a patient in a psych hospital.

As regular readers of this blog will know, I spent 9 1/2 years in a mental hospital between 2007 and 2017. I spent my first sixteen months on the locked ward. This is pretty much as I imagined it before I entered the psych system myself: floridly psychotic patients screaming and exhibiting other erratic behavior, staff running around trying to control it. Like I said yesterday, I witnessed people being secluded and being forcibly medicated several times. I was an informally admitted patient, so I couldn’t be subjected to any form of restraint. This isn’t to say it didn’t happen, as I said.

The staff/patient ratio at my ward was around 1:5 during the day. This means there’s not much time for staff to keep regular tabs on what patients are up to if they aren’t kicking up a fuss. I, in fact, at one point got told I would be put into time-out if I “needed more care than we can provide”.

After those sixteen months, I transferred to an open resocialization unit and later another open ward. The staff/patient ratio there was around 1:10, sometimes even less. As a result, patients had to help one another out sometimes.

On the locked ward, I had treatment plan reviews once every six weeks. This was because the ward was basically a crisis intervention/stabilization unit, where officially you could stay a maximum of six months. I must say there wasn’t much in the way of therapy. Of course, most patients admitted to this unit, suffered with psychotic disorders, for which the main treatment is medication. For me, it was decided I just had to figure out a place to go after pulling myself out of the worst crisis and, for this reason, I had mostly contact with the social worker.

On the resocialization unit, I did get psychotherapy. This was where I was diagnosed with (complex) PTSD and dissociative identity disorder in addition to autism. Thing is, once I moved to the other ward, these diagnoses were all removed. It was decided I was just care seeking and dependent and needed to be kicked out of the hospital.

We did have day activities most days on each psych unit. However, not all patients were able to participate. I, for one, usually was not.

In summary, my entire psychiatric hospital stay was one lengthy journey of changing diagnoses, social workers who tried to find me a place to live but had a very narrow view of what I needed, limited nursing support and hardly any day activities. I did start two of my three current daily psych meds while in the hospital. However, I must say, looking back, I hardly made any progress during those 9 1/2 years.