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.

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.

A Phone Conversation with My Mother

Posted on by Astrid

Last Monday, my mother called me. She rarely if ever used to call me when I still lived with my husband, but now she’s been the first to attempt contact a few times already. I don’t know whether I need to feel bad about not contacting her first, as conversations usually get uncomfortable for both of us.

Like, on Monday, I had just been in an angry outburst when she called. I couldn’t avoid telling her, as I needed a few minutes to regroup. That caused the conversation to center on my (perceivped by either of us) problems and my mother’s attempt to solve them. She was offering me all kinds of advice. If I just stop panicking at frustrating situations or learn to cope with unexpected change, I’ll be able to live with my husband again. I never even said I want to leave the care facility. Of course though, I’m supposed to have this as my ultimate goal anyway. Who, after all, would choose to live in care if they didn’t absolutely need to?

I was terribly triggered by my mother’s unwanted advice. When processing this conversation with my husband yesterday though, I was reminded of her perspective.

You know, I was born prematurely. My mother already feels guilty about that to some extent, as if she was the one kicking me out of her womb. Well, obviously she wasn’t.

Then in our discussion, I disclosed to my husband that I was most likely exposed to valproic acid, an anticonvulsant, in utero. My mother isn’t certain of it, as she took different anticonvulsants for her epilepsy over the years. However, all valproates and most other anticonvulsants have some risk of affecting the fetus when taken by pregnant women. The realization that this might’ve contributed to my developmental disabilities, didn’t happen right away even though in the 1980s, valproates carried warning labels already. It probably came when I was last assessed for autism in 2017 and my mother was asked whether she took any substances or medications during pregnancy. At around the same time or shortly before, there was an article in the newspaper my parents read about large numbers of French women being given valproic acid during pregnancy as late as 2014. This lead to over 4000 children having serious birth defects and even more having developmental disorders. Up to 40% of children exposed to valproates in utero are autistic.

My husband expressed that this may be a factor in my mother’s trying to deny the significance of my autism. After all, if she did something to contribute to me being disabled, she’d have to deal with immense guilt if admitting its full significance. Then it is more understandable that she’s in some denial. It may also explain, I now realize, why she’s trying to “fix” me. I told her she doesn’t need to, but she remains my Mom.

For clarity’s sake, a pregnant woman getting a seizure may be harmful to both mother and child and my mother said this risk was fairly high in her case if she didn’t take meds. I don’t know, as my mother has been seizure-free for 30+ years and off meds for as long as I can remember. However, I mean this to undo the blame. The doctors did what they thought was best, at least that’s what I assume. My mother and I have some questions here too, as my mother also took part in a trial of aspirin to prevent premature birth, which obviously didn’t work. My mother at least did what she thought was best. She never intended to have me early or cause me fetal anticonvulsant syndrome. More importantly though, there’s no need to fix me. I’m content the way things are right now.