“Know-It-All”: Challenges of More Verbally Capable People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter K post. I really have no idea where this is headed. I seem to struggle with the letter K each year. Today, after some thought and looking through my various books on developmental disabilities, I decided on “know-it-all”. This was in an A-Z guide on autism, not intellectual disability.

Indeed, individuals with an intellectual disability don’t usually look like “know-it-alls”. This is more like the stereotypical description of an Asperger’s style autistic. However, what I want to talk about today is the risk of overestimating people with intellectual and developmental disabilities based on their verbal abilities.

An example I once heard about was of a young woman assessed as having a moderate intellectual disability. When she met new people, she’d say: “Oh, I don’t know that person, let me go up to them and introduce myself.” This language is quite advanced. However, as it turned out, it was all script-based and she really had a severe intellectual disability. Due to her intellectual disability not being recognized enough, she was chronically overloaded, which led to challenging behavior.

Another example, I read about when researching communication issues for my letter C post. A person who could read a pharmaceutical handbook, refused a certain medication because it could cause nausea. When his doctor inquired whether the person knew what nausea felt like, it turned out he had no idea.

I, for one, am thought of as quite the know-it-all too. Indeed, though I do have an at least average verbal IQ, I get chronically overestimated due to the fact that I can talk up a storm.

Unfortunately, I for one do overestimate my own understanding too. This can be quite hard, because people often ask me to inquire rather than assume, but when I don’t know that I’m making assumptions, it’s hard to decide to inquire about them instead.

Justice: Issues Facing People With Intellectual Disabilities in the Criminal Justice System #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m once again really late writing my #AtoZChallenge post and actually considered not writing it today, but that felt rather off. For my letter J post, I am writing about issues facing intellectually disabled people in the criminal justice system, be it as victims, witnesses, suspects, defendants or incarcerated individuals.

There are many issues for these individuals. For instance, people with an intellectual disability are far more likely to be victims of crime than the general population. For violent crimes, they are twice as likely to be victimized, whereas for other crimes, the ratio is even higher. For instance, people with an intellectual disability are easily exploited.

That being said, crimes against people with intellectual disabilities are not prosecuted as often as crimes against non-disabled people. The reason may be that intellectually disabled people aren’t viewed as credible witnesses.

When people with an intellectual disability are themselves suspects, they often do not get appropriate supports and reasonable accommodations to allow them a fair trial. In the UK, people with an intellectual disability can access an “appropriate adult”, who isn’t their lawyer but whose job it is to make sure their disability is accounted for during involvement with the justice system. This as far as I know does not (yet) exist in the Netherlands or the United States.

Many individuals particularly with a mild intellectual disability end up in regular correctional facilities because either their intellectual disability wasn’t recognized during trial or they don’t qualify for an insanity defense. Unfortunately though, the regular prison system can’t really accommodate these individuals. One of the student staff here used to work in correctional facilities and this motivated her to retrain as a support worker.

In the United States, people with an intellectual disability are exempt from the death penalty. However, it varies by state how it is determined whether a person actually has an intellectual disability. In some states, the jury decides on this, whereas in others, it’s the judge. Either way, I feel this is discriminatory, as neither a lay jury nor a judge are trained to recognize intellectual disability. Now I oppose the death penalty anyway, but I feel this lack of proper identification could affect individuals not at risk of execution too.

IQ As It Relates to Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter I post in the #AtoZChallenge. Today, I want to write about IQ. IQ, a measure of intelligence, is one of the determining criteria for intellectual disability. So how is it measured in the general population and in people with an intellectual or developmental disability?

The concept of IQ dates back to the 19th century, when early psychologists first started developing tests for measuring intelligence. These were based on the idea that intelligence increases as a child grows up, so they were based on skill sets a child of a certain age should be able to master. IQ was then decided to be intellectual age divided by chronological age multiplied by 100 (to get the idea that a normal IQ is 100). For example, if a child aged five masters the skills of a three-year-old, their IQ was 3 / 5 * 100 = 60.

This is problematic, because among other things it does not allow for testing of adults and does not allow for variation on different skill levels. It was therefore abandoned in favor of a norm-based IQ testing system. Both the Wechsler scales (most commonly used in Europe) and the Stanford-Binet test (which is used more often in the U.S.), are norm-based, with an IQ of 100 being average and standard deviations of 15 (Wechsler) or 16 (Stanford-Binet) determining differences such as intellectual disability and giftedness.

I am familiar only with the Wechsler scales. There is a preschooler, a children’s and an adult version of these. The children’s and adult versions at least contain non-verbal as well as verbal tasks. Until some years ago, these were divided into categories of verbal and performance IQ. I, for one, can only have my verbal IQ tested. This refers to skills such as math, vocabulary, working memory, information (general knowledge questions), etc. The performance/non-verbal tasks include patterns, object recognition (where you see an object with part of it missing and need to identify it), etc. I am pretty sure that, if my performance IQ could ever be tested, it’d be significantly lower than my verbal IQ, as is commonly the case with verbally capable autistics.

On the other hand, nonspeaking or partly verbal autistics often find their intelligence being underestimated because they struggle on verbal IQ tests or cannot take them at all. For this reason, for nonspeaking autistics, a non-verbal IQ test may be more appropriate.

I did honestly find that the adult Wechsler scale was quite difficult even for me, a person with a high level high school and some college education. I honestly doubt those with a moderate intellectual disability will even be able to answer the simplest of questions on it. For example, the first math question was something like: “John had six apples, Peter had two apples, how many apples did the two of them have combined?” Interestingly, the first vocab question was to define “apple”. And no, in Dutch, there is no ambiguity (in case people are thinking “the brand that makes iPhones”). However, the correct answer was “fruit”, which I struggled to come up with, as that’s not a definition, more like a categorization.

Historical Perspectives on Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter H post in the #AtoZChallenge. Today, I will discuss some of the history of intellectual and developmental disabilities.

Throughout history, people with intellectual and developmental disabilities were feared and stigmatized. However, it wasn’t until the mid-19th century that societies in the western world started taking action to take care of them outside of family homes. At first, institutions were more or less educational, based on the idea that people with intellectual disabilities could learn too. However, towards the end of the 19th century, there interestingly was a shift away from educating towards warehousing. This was when large-scale state institutions were built.

An interesting turn involved the work of Wolf Wolfensberger around the mid-20th century. He believed in “normalization”, a term still used today. In fact, I saw it in the job description for support workers at my home. To be clear, I cringe at this idea, because who decides what is “normal”, anyway? Of course, the idea really should be to value intellectually disabled people’s contributions to society as much as non-disabled (“normal”) people’s. However, I personally find this term used when I am refused a plastic coffee mug to drink from, because a ceramic mug is more “normal”. For those not aware, due to my mild physical disability, I find a plastic one easier to hold.

I can’t end this post without touching on the Nazis’ treatment of the intellectually disabled. Initially, they were open about their eugenic “euthanasia” program, using intellectually disabled people to test mass murder techniques on they could later use on other groups such as the Jews. When families and other people started protesting too much, they went on in secret. The usual methods of killing disabled people in this later stage were starvation and medication overdoses.

I also should really touch on the ever-changing terminology surrounding intellectual disabilities. In the early 20th century, people with an intellectual disability were called “feeble-minded”. Then came terms like “idiot”, “imbecile” and “moron”, referring respectively to people with a severe/profound, moderate and mild intellectual disability. Then came “mental retardation”, which wasn’t actually removed as a term from the Diagnostic and Statistical Manual of Mental Disorders (DSM) until 2013. The current term in DSM-5 is intellectual developmental disorder, but intellectual disability is most commonly used.

Genetics of Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. I was at my and my husband’s house in Lobith yesterday and, though I fully intended on writing my letter G post while there, I didn’t get to it. Rather than give up on the challenge altogether, I’m going to make up for it today by writing my post now. For my letter G post, my topic is “genetics”. It’s not a topic I know all that much about. I mean, I know the basics of heridity through dominant and recessive, autosomal and X-linked genes. I also know a little about trisomies such as trisomy 21. However, I really don’t think I know much beyond high school biology. For this reason, I am going to provide a very basic introduction to the genetics of intellectual disability based on the info I could find online.

First, of course, not all intellectual disabilities are caused by genetic factors, or solely by genetic factors. Environmental factors such as birthweight and gestational age (ie. whether the child was born prematurely), exposure to substances such as medications or drugs during the fetal period, etc., can contribute to or even cause an intellectual disability too.

That being said, even if the cause of someone’s intellectual disability is (most likely) genetic, it is not always known. There are thought to be approximately 2,500 genes that contribute to intellectual disability, but about half of these haven’t yet been identified. Due to genome and exome sequencing, however, the diagnosis of intellectual disability-related genetic mutations is making advancements.

There are some genetic intellectual disability syndromes that run in families, such as Fragile X Syndrome. However, the majority of individuals with a genetic mutation causing their intellectual disability, did not inherit it from their parents. This means that a future child born to the same family, isn’t at increased risk of being intellectually disabled.

Why, then, would you want to know whether there’s a known genetic cause? Well, a recent article I found on the Dutch Center for Consultation and Expertise website, explains it very well: knowing what syndrome a person has, makes the person’s perspective clearer and may provide ideas for future medical or behavioral intervention. For instance, a doctor cited in the article talked about a girl with a particular genetic mutation causing her intellectual disability which he knew also causes leukemia. The doctor mentioned this to the patient’s primary care physician, who remembered this two years later when the girl complained of significant fatigue. This allowed her to be treated early for what turned out to be leukemia indeed. Another example is the fact that people with Phelan McDermid Syndrome usually experience bipolar-like mood dysregulation in adolescence, which, if not treated, leads to loss of skills. Since these people often have severe intellectual disability, their behaviors could easily be misinterpreted if their syndrome isn’t identified.

Of course, there remains a significant portion of the intellectually disabled population for which no genetic syndrome can be identified. For those with milder intellectual disability and no clear physical features, genetic testing may not even be routinely done. Same for those with other developmental disabilities. In my own case, the possibility of genetic testing was mentioned in my application for one-on-one support, but was immediately dismissed because it’d be “too much for me to handle”. Not that it was ever discussed with me. For all I knew, there was no need for it in my case as my conditions are all attributed to premature birth, with the exception maybe of autism, and people who are just autistic don’t get genetic testing done either.

Functioning Levels, Support Needs and Other Ways of Classifying Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. For my letter F post, I am going to talk about functioning levels and related ways of classifying the severity of intellectual and developmental disabilities. Most of these are highly controversial within the developmentally disabled community itself.

First are functioning levels. These can be described in several ways. With respect to autism, there is of course high-functioning and low-functioning. The distinction between these is not at all clear: does high-functioning mean an at least average IQ, the ability to speak or the presence of relatively few autism symptoms? In any case, these are often very confusing.

An alternative approach suggested by some autistics is to speak of high, moderate or low support needs. I, according to this classification, would be considered as having high support needs even though I’m considered “high-functioning” in at least two of the aforementioned ways (speech and IQ).

Some people have proposed yet another classification, not based on support needs or apparent functioning, which are after all based on a (presumably neurotypical) professional’s assessment, but on masking. Masking is the ability to hide one’s disability-related symptoms from the public. In this sense, “high-functioning” individuals are considered high-masking.

In intellectual disability without co-occurring autism or other neurodivergencies, functioning levels are slightly more useful than in autism, in that they are based on IQ and level of adaptive functioning. In this classification system, someone with an IQ between 50 and 70 (or 85 in some countries, such as the Netherlands) is considered mildly intellectually disabled. Someone with an IQ between 35 and 50 is considered moderately intellectually disabled. An IQ between 20 and 35 puts someone in the severely intellectually disabled range, and an IQ below 20 puts someone in the profoundly intellectually disabled range. That being said, having had my IQ tested many times, I wonder how well IQs below like 50 can be measured on standard intelligence tests. I guess for more severely disabled people for this reason, professionals prefer the term mental age. Like I said yesterday, this is considered discriminatory.

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

Posted on by Astrid

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.

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.