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

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

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.

Something I Struggle With

A few weeks ago, Marquessa over at The Next Chapter started a writing challenge to get herself motivated to write everyday. Yesterday, I saw that Cyranny had joined in. Cyranny started with the first prompt. That one didn’t appeal to me, so I will go to the second. It is to share something you struggle with.

Regular readers may be able to guess what I’m going to share. It wasn’t the first thing that came to mind, but I got inspired by Marquessa’s post. She shared that she struggles with being called “pretty”. She then goes on to say that brains matter more to her than beauty. Well, I wouldn’t exactly say I’m the opposite, but I do struggle with being called “intelligent”.

As a child, I was often called intelligent. My parents loved bragging about my so-called genius. After I had an IQ test at age twelve, this became even worse. The IQ test, though not the first one administered to me, was the first one about which the assessor actually told my parents the exact IQ outcome. My performance IQ can’t be measured because I’m blind, but my verbal IQ was identified as being 154 on the Wechsler scale. This means I was supposedly within the highly gifted range.

As a preteen and early teen, I didn’t mind my parents bragging about this three-digit number as much. I was proud that, according to my mother, I had the same IQ as my father. Now the only time my father had an IQ test administered, he at least told me that was in the pub with a psychologist friend and he was rather drunk. I’m assuming his real IQ may be higher.

As I grew older though, my apparent high IQ more and more stood in the way of my being myself. It was frequently used by my parents and professionals to “prove” that I should be capable of solving my own problems in social situations. This got me interested in the concept of giftedness as asynchronous development. Later, I was diagnosed with autism. Still, my parents reasoned that I was just extremely intelligent.

The reason I struggle greatly with being called “intelligent” is the assumption that I am smart enough to solve non-intellectual problems. This may be so in most gifted people – I think I remember recent research disproves the theory of asynchronous development -, but it isn’t the case for me. Like I mentioned a few weeks ago, my emotional level is equivalent to someone approximately 18 months of age.

Last year, my IQ was used against me to deny me long-term care. I mean, due to my multiple disabilities and low emotional functioning level, I do best in a care setting normally catering towards severely intellectually disabled people. Because of my IQ though, I can’t get funding based on developmental disability. I am lucky that I’m blind in this respect, because I ultimately did get funding based on that.

Contrary to Marquessa, I do not struggle with compliments about my intelligence because I don’t agree with them. I mean, the IQ test I took at age twelve is rather outdated now and I scored much lower when I took another one in 2017. However, I still know I’m indeed intelligent. That being said, that’s not all I am. In the future, I’d like to be able to take pride in my intellectual abilities without them triggering the fear that I’ll need to be good at other things too.

Emotional Development

Last Tuesday, I discussed my care plan with my support coordinator. She needed to update it because the facility is going to apply for a higher care profile for me. Besides, it needed to be made current for my living in the facility rather than at home anyway.

My care plan is divided into several sections, including general health, diagnoses, intellectual, emotional and social functioning. The part about my intellectual functioning unfortunately still lists my IQ as measured 20 years ago. Since it according to the test dropped some 35 points between 1999 and 2017, I’ve wondered whether this is merely due to Flynn effect or something or I’m actually experiencing cognitive decline. Still, my IQ as measured in 2017 was above-average, so it doesn’t really matter for long-term care funding anyway.

In the part about my emotional functioning, I saw for the first time the results of the emotional development impression the consultant from the Center for Consultation and Expertise had written in 2018. This was a bit shocking to be honest. I knew I’m thought of as functioning at an emotional level equivalent of a toddler. It was difficult though reading that in several areas, i’m supposed to function at a level of less than 6 months. This wasn’t surprising though.

For instance, one area in which I function at a level of 0-6 months, is body awareness. The reason the consultant listed was my inability to make contact when overwhelmed. I would add to that my inability to distinguish different bodily sensations, such as hunger and pain. I tend to react to everything that’s physically overwhelming by acting in a self-stimulatory way. The consultant also listed my craving physical stimulation such as rocking as a reason for this.

I also apparently function at 0-6 months with respect to differentiation of emotions. In other words, I don’t do that. The consultant explained that I have a lot of distress and am hardly ever relaxed. While this is true, I’d like to add that I don’t generally distinguish between different strong emotions. Like, at all. Each strong emotion feels equally overwhelming to me, even strong “positive” emotions.

With respect to verbal communication, my level is 3-7 years. Because this scale was developed for people with intellectual disability, the highest level is 7-12 years and I in some ways expected to be qualified as functioning at that level. I do with respect to handling familiar tools, such as my computer. However, the consultant apparently recognized my less-than-great (understatement!) language comprehension.

It was rather interesting to read this assessment, even though of course the concept of mental age used here is a bit off to say the least.