Disabled Ace Day

Posted on by Astrid

Hi everyone. I once again haven’t been active on the blog much. I’ve been listening to a lot of podcasts lately, mostly true crime. Today though, I decided to check out the podcast The Ace Couple. In their most recent episode, which came out today and which I’m currently listening to, the podcast hosts said that it’s disabled ace day today. Ace, for those not aware, is short for “asexual”.

Like I shared when writing my post for coming out day, I’m for the most part asexual. I’m still figuring out where exactly I fit on the asexual spectrum. For those who don’t know, since sexuality isn’t an all-or-nothing thing, asexuality is a spectrum describing anyone who experiences significantly less sexual attraction to other people compared to the general population. People who are not asexual, are commonly called allosexual (“allo” being Greek for “other”). This also clarifies that people on the asexual spectrum, even people who are altogether ace, may experience sexual desire and pleasure.

I do not claim to be an authority on asexuality. Had I been able to be open about my queerness all this time, I might’ve been able to gather more information without feeling guilty. Like I said, I’m still figuring things out.

This is also where disability comes in. Commonly, it’s thought that disabled people, particularly those with intellectual or developmental disabilities, don’t experience the same sexual feelings as non-disabled people do. This is simply not true, although disabled people are more often taught to suppress our sexual feelings. After all, particularly those with intellectual and developmental disabilities are too often seen as “children in adult bodies”. I myself have used these analogies when describing emotional development. Because it finally enabled me to get sort of okay care, this analogy appeals to me even though it’s inherently ableist.

When a disabled person identifies as asexual or somewhere on the ace spectrum, it is then too easily thought that this is because of the way the person was raised or educated. This is the counterstereotype I so often used to talk about in my early days on WordPress (oh my, I need to bring some of those old posts back): if we want to defeat the idea that disabled people can’t have sex, asexual disabled people could be seen as harming the cause, similarly to how I’m seen as harming the cause for community-based support by living in an institution. In reality though, prejudice and oppression are systemic, not individual. Besides, it’s not our job as marginalized people to fit ourselves into society’s neat boxes, whether these are stereotypes or counterstereotypes or other ways of telling us who we are and how we should live our lives.

This doesn’t mean I’m not influenced by prejudice. Regularly, I think I’m too disabled for a relationship and that’s why I’m ace. I’m pretty sure that’s not true, as I do have many years of being in a relationship with my wife before either of us clarified our authentic needs and wants to the other. I remember writing a post back in 2008, which I’m not going to bring back here (don’t worry, wife!), in which I described not knowing whether I was actually attracted to her and thinking I certainly wasn’t interested in sex. If that doesn’t tell me I’m ace, what does?

The more I write, the more memories confirming that I’m indeed asexual, come to mind. I was quite repulsed as a teen, purposefully skipping the biology chapter on reproduction and refusing to read the sex ed material that my parents brought me at around age nine. Then again, I’m pretty sure my refusing to read it was because I hated reading Braille at the time and my parents made quite a big deal of me reading this book.

However, what if my asexuality is in fact related to my being multiply-disabled, including autistic? Does that mean I’m doing the disabled or autistic communities a disservice? I don’t think so, because like I said before there’s no value in dictating who I am. Besides, as someone who lived for twenty years not knowing she’s autistic and yet who was autistic all along, chances are we’ll never know for sure.

I’m joining in with #WWWhimsy.

Attention Is a Valid Human Need

Posted on by Astrid

Hi everyone. One of the prompts for this week’s Writer’s Workshop is to write a post based on the word “attention”.

This immediately brings back a flood of memories of my time at the intensive support home. On one particular occasion – but I’m pretty sure there were many more -, a staff said to her coworker about a client in crisis: “It’s all attention.” She said “attention” in English, not Dutch, apparently hoping the client in crisis or his fellow clients (including me) wouldn’t understand. One of my fellow clients immediately chimed in by translating her comment into Dutch.

The idea that challenging behavior is “for attention” is often not entirely based in truth. However, even if it is, attention is a valid human need. And especially at the intensive support home, clients routinely didn’t get it.

You might think we did get more than enough attention, since the staff/client ratio is 1:2 to 1:3 at this home. But more often than not, staff were doing stuff on their phones, chatting to each other and on at least one occasion, I caught two staff playing a board game together and the third cheering for them. That third person was my one-on-one for the moment, but, because I was also playing a game with a fellow client, the staff thought it not necessary to pay attention to me. Then when I started showing signs of distress, he missed them until I ended up in a meltdown, then told me I could’ve said in a calm voice that I wanted to go to my room. Well, guess what? One of my first signs of distress is an inability to communicate effectively.

On another occasion, the fellow client about whom the staff felt the need to communicate his “attention-seeking” in English, was having an outburst again. I told my one-on-one for the moment that I could see why, because he’d been left to his own resources, often locked in his room, for most of the day. My one-on-one told me he’d had more than enough attention, since he had been having a cup of coffee with the client and had created his day schedule. As if a fifteen-minute coffee chat means you can be left alone for the rest of the day.

Remember, I and my fellow clients have a developmental disability. Most of us cannot participate in everyday conversations among non-disabled people, so when the staff are chatting to each other, most of us will feel left out of the loop. And just because staff are in the same room with us, doesn’t mean they’re attending to our needs, as my example of the board game illustrates. At that point, I needed someone to pay attention to the subtle signs that I was going to land in a meltdown.

And like I said, attention is a normal human need. Staff aren’t telling each other that they’ve had more than enough attention because they’ve had a break (that usually lasts for 45 minutes, four times a day) together. In my opinion, honestly, they should.

The Downside of Praise

Posted on by Astrid

As a child, I was often praised excessively for my achievements. I remember one day, when I did calendar calculation at a family get-together, calculating what day of the week May 3, 1327 (for example), was, my mother exclaimed: “She’s sublime, she’s a genius!” For those who don’t know, many autistic or otherwise developmentally disabled people, including those with lower measured IQs, have this skill as what is stereotypically called a “splinter skill”. Now don’t get me started on the ableism of the term “splinter skill” when applied to people with lower measured IQs, but calendar calculation alone definitely doesn’t make someone, anyone, a genius.

And just so you know, it’s incredibly counterproductive to praise a person for who they are rather than what they do. It is usually better to praise someone for their achievements by naming those achievements as well done rather than praising the person themself. Moreover, any excessive praise, even if you say “you did an awesome job calendar calculating”, can be taken the wrong way.

Besides, many people feel they are praised for something that doesn’t reflect their personal values. For example, when I am praised for completing a personal care task, all I see is pressure to be able to do it independently the next time too. When, however, I am praised for creating something nice out of polymer clay, for my writing or the like, I feel like I’m valued for my contribution to the world.

There is, or so I’ve read, some school of thought that says any praise, whether person-centered or accomplishment-based, should be avoided by parents or carers. This doesn’t mean parents or carers should completely ignore their child’s achievements. Rather, simply pointing them out and engaging with the child about their achievements, will, according to these people, help the child develop a healthy sense of self. Honestly, I am inclined to agree with this.

Youth: Issues Specific to Intellectually or Developmentally Disabled Children #AtoZChallenge

Posted on by Astrid

Hi everyone. Phew, we’re almost done with the #AtoZChallenge. For my letter Y post, I thought I’d talk about issues specific to youth with intellectual and developmental disabilities.

Children, disabled or not, by definition, are still growing and developing towards their full potential. As a result, most developmentally and intellectually disabled children and young people will not qualify for long-term care. They are, instead, served under the Youth Act, which falls under the local government. This means that their parents or carers will need to reapply for care at least every year.

Most children with intellectual or developmental disabilities will go to school. Like I mentioned before, those with milder disabilities, due to “suited education”, are forced to go into mainstream classes. This particularly applies to autistic or otherwise neurodivergent children with an average or above-average IQ, but when doing research for this post, I found out that children with a mild intellectual disability (IQ 55-70) won’t qualify for special ed unless they have additional needs too.

Children with moderate to severe intellectual disabilities and those with mild intellectual disabilities and additional issues will usually go into special education. Usually, these schools have different educational levels depending on the severity of the child’s disability. I heard that some schools allow pupils in the highest level to take part in the lowest level regular school, called practice education, part-time. Practice education has only recently become part of the regular, diploma-earning educational system; until I think last year or the year before, pupils in these schools would just earn a certificate.

The most profoundly disabled children, who are deemed “unteachable”, will go to day centers for children and adolescents with intellectual disabilities. Some of these day centers do have a “school prep” group too.

I feel very strongly that “suited education” and the Youth Act leave behind a lot of children with intellectual and developmental disabilities. I mean, the government wants to cut the youth care budget even more and, though I understand this given the fact that one in seven children nowadays receives a form of youth services, this should not affect children with genuine intellectual and developmental disabilities. Like myself twenty to thirty years ago, though in my case being left behind was due to my parents’ denial.

Visibility of People With Intellectual and Developmental Disabilities in Mainstream Society #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m really late writing my letter V post in the #AtoZChallenge. I am not too excited about today’s topic either, but that might change as I write. I just came up with it two minutes before opening the new post window on WordPress. Today, I want to talk about visibility of people with intellectual and developmental disabilities in mainstream society.

Until the mid-1990s, individuals with intellectual disabilities were routinely institutionalized on grounds like mine, sheltered away from the general public. While there are advantages to this, it did mean the general population hardly saw any individuals with intellectual disabilities, especially not adults or those with more severe disabilities.

In the 1990s, institutions were often demolished altogether and individuals with even the most severe disabilities were moved into the community. This, however, did little to help society be more accepting of people with intellectual disabilities.

Now, with “suited education”, which was introduced in the mid-2010s, individuals with disabilities are encouraged to attend mainstream education if at all possible. This means that more people with mild intellectual disabilities and other developmental disabilities, who would otherwise attend special ed, are now in regular classes.

I, having been forced into mainstream education with very few accommodations, am not a fan of “suited education”. My opinions on deinstitutionalization are mixed. While I do feel that we need to be allowed to be visible in mainstream society, I do not feel that this is a case of the disabled needing to assimilate or be “normalized”. Truthfully, I do not feel that we need to prove our right to exist beyond the margins. That being said, the reality is that society doesn’t want us. At least, it doesn’t want me, a high support needs autistic and multiply-disabled person. When I still ventured out into the world on my own, I had just a little too many encounters with the police that often weren’t pleasant.

Unique: A Rant on the Demise of Individualized Care #AtoZChallenge

Posted on by Astrid

Hi everyone. Today for my letter U post in the #AtoZChallenge, I want to rant really. I am not feeling well and really feel like, as an individual with developmental disabilities, my unique needs are missed in favor of what “everyone” or “the group” needs.

Back in like 2009, on my first WordPress blog, I already wrote a blog post criticizing care profiles for their doing away with individualized care. After all, care was now grouped into “care heaviness packages” (the old word for care profiles) based solely on one’s primary disability and one’s score on a rating scale, rather than there being different care classifications for each different sort of care (eg. support, personal care, housekeeping, etc.).

This is not what I want to talk about in this post though. Rather, I want to talk about the individual’s care needs being shoved under the carpet because they do not align with what that particular home is used to providing in general. And, in the case of my current home, it isn’t like there aren’t exceptions.

I cannot go into detail without breaching confidentiality – although really the staff shouldn’t have told me confidential information about other clients, truthfully. However, my home consists of “the group”, which are six clients or six clients plus me, and then there’s either me or I’m part of “the group” depending on whom you ask and when, and then there’s a client who gets full-time one-on-one. The one-on-one client is exempt from almost everything “everyone” needs to deal with, such as temp workers, regular switches in staff, of course alone time, etc. I don’t know all the reasons behind this and even if I did, I wouldn’t be allowed to disclose them here, but I frequently find myself being jealous of this client because her needs seem to take precedence over everyone else’s.

Then when competing for having our needs met, it’s me against “the group”. The home employs an extra full-time staff member to do my one-on-one even though I don’t qualify for full-time one-on-one, so I figured this should be a no-brainer: we all get our needs met, since I’d get my one-on-one and then there’s still even some hours when there’s an extra staff for “the group”. “The group” should be in luck! Well, no such thing: I am in luck if I get my one-on-one according to my day schedule and even then staff complain that I ask for too much if I ever so much as dare leave my room once during my time without support.

As for the temp workers, well, my needs get met last, because “the group” needs at least one regular staff and even if there are three regular staff members on shift, usually the fourth will be sent to support me so that the second won’t have to explain too much to number three.

In another situation, too, my individual needs get shoved under the carpet in favor of what “everyone” needs, ie. when I’m treated harshly for having a meltdown. I often hear staff say that they’d treat my fellow clients the exact same they treat me. Well, it may be so, but I’m not my fellow clients. I am me and I have my own unique needs.

Mental Health in People With Intellectual or Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. I once again didn’t have time for writing my letter M post in the #AttoZChallenge yesterday, because I was at the countrywide cerebral palsy day and then at my in-laws and was too tired once I came back to the institution to write my post. Let me for this reason write it today. For my letter M post, I am going to write about mental health as it relates to people with intellectual and developmental disabilities.

People with an intellectual disability are more likely to have mental health problems, including severe mental illness, than the general population. However, in the general psychiatric system, these people are not usually adequately helped. This means that early recognition of people with an intellectual disability is very important. Here in the Netherlands, some psychiatrists actually advocate for administering a simple screening tool for mild intellectual disability to each person coming into care with significant mental health issues. That way, if a person is identified as potentially having an intellectual disability, treatment can be adapted for them.

Other issues in mental health services for people with intellectual disabilities include the need for more trauma-informed care, since intellectually disabled people are at increased risk of being victims of abuse. Of course, trauma treatment, as well as therapy in general, needs to be specifically adapted to meet the intellectually disabled person’s needs. With EMDR, this is possible even with severely intellectually disabled people. Other forms of treatment, such as dialectical behavior therapy and schema-focused therapy, are, with some modifications, useful for people with mild intellectual disability.

In most countries, people with mild intellectual disability are usually seen by general psychiatric providers. However, here in the Netherlands, at least some mental health agencies have specialized teams or even an entire separate agency serving those with mild intellectual disability and co-occurring mental health issues.

Though autism as a co-occurring developmental disability with mental illness really poses some of the same challenges as does intellectual disability, this is not widely recognized. I mean, most mental health agencies here do have autism teams, but these are often dedicated to diagnosis and short-term psychoeducational support of autistic adults. There are a few specialist treatment centers for autistics with highly complex needs due to comorbid mental illness and/or severe autism, but these are inpatient units with long waiting lists. As far as I’m aware, there hardly seems to be any outreach-based, long-term treatment specifically for autistics with complex care needs.

“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.

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.